Circus

Wow…. What a day!

I purposely planned nothing for this morning so Dinky would be fresh for the Circus trip.

We were invited to the circus by the lovely mum on a parenting website that opened my eyes to PDA.
We had met up before with the kids, her son (who is 4 months younger than Dinky), is funny, bright, charming and has a diagnosis of PDA. It is where I became confident that my dinky fits the criteria, as it was scary how alike they are!

I liked meeting them, the mum is someone who was not only a non judgemental person at heart (and I mean about everything, including the homelessness), but also when it came to Dinky’s behaviour. It wasn’t instant strategies I should be using, try this and that. It was ‘do what works’.

As we were leaving for the circus I put Dinky’s badge on, it says

I am not naughty

I have special needs

I got this because I was sick and tired of the same things happening when we were out. Dinky would get looks even behaving for being on the wrist reins.

“That kid looks too big for wrist reins”

“Another young mum who cant control her offspring”

It is not just me who hears it. Dinky does too, and it has caused a number of meltdowns. Then when she does have meltdowns, or runs, or wrestles me for the reins. Again the comments. Although I am getting used to them, and now that I have an idea of why she behaves the way she does, it bothers me less, they just don’t know.
The worst is people who think that they have some kind of right to tell dinky off. Which doesn’t work for a number of reasons. I hate it and it only serves to cause more issues. I do not see why these people think that a one time interference actually could change a child’s behaviour. Especially if it was considered to be parenting.

Since we got the badge, people give us distance, instead of comments about my parenting, I hear comments about how not enough help is out there for children with special needs. No one butts in when she kicks off. I can relax which makes it easier for both of us.

People may think I put it on her to label her, or to excuse her, but what is fairer on dinky?

I wont lie, we had one rather amusing incident (obviously in hindsight, at the time I had no idea what to do!) regarding the badge. Dinky is a very good reader. It is her biggest academic strength and although her comprehension isn’t tip top, she can read the words. Well, normally I would very happy with her practicing her reading skills, except on this occasion!

We were out and about and Dinky had her badge on. We were in the shop getting her an afterschool treat as I hadn’t had time to go home after an appointment. We were going to the park so I put the badge on because other kids don’t always understand her. Anyway, in the shop she deliberately pushed something over. I asked her why she had done it. her response…

It wasn’t my fault, I am not naughty, I have special needs… see!

And pointed to the badge. Needless to say I tool the badge off and we went somewhere quiet so I could attempt to explain the difference between being allowed to be naughty on the say so of a badge and the badge explaining that sometimes she might appear naughty when it isn’t her fault. I tried to explain why I got the badge in the first place but at a level she could understand. However it seemed I couldn’t reach that level, as she just didn’t understand. So we didn’t have the badge for a while, and when I reinstated it I told her that it is only there to stop other people saying things to her, not an excuse to misbehave. Any deliberate misbehaviour and the badge would go away again.

So far so good. No more deliberate badge related naughtiness!

Back to today.

We got the bus to the train station with only minor issues which were easily resolved with talk of the circus.

At the train station everything was fine, until the three tone information sound was blared from above dinky and then a fast train pelted past the station making a very loud noise. Dinky grabbed my hands and put them over her ears shrieking. I calmed her only to have to do it again a couple of minutes later.

(The woman who took me in, and her family, used to joke about my deprived childhood after they made me watch all the crap… sorry, I mean ‘classic’ films I had escaped…. sorry, ‘missed out’ on when I lived with my mother. The circus was another of those childhood things I never did, or at least if I did with my dad I was too young to remember. So this was my first time at a circus too.)

I started to get worried. What if dinky couldn’t handle the noise levels at the circus? I didn’t know what to expect, how noisy they were, my only knowledge of a circus are animal ones, and I didn’t think this was an animal one, and that is only from Dumbo and curious George. I guessed there would be clowns and trapeze but really I was just worried about how Dinky would cope. Although saying that, the lad we were meeting has PDA, and we had talked about sensory issues, and if he could cope, maybe she would be ok. The great unknown!

Anyway, we got to our destination with only a few more tunnel and train noise related issues. We went to their house, where Dinky went up to find the lad, who was hiding to give him the little gift I couldn’t resist. I met the lovely mum’s other half. We were all talking PDA while the kids played. It was nice. Dinky came into the kitchen and was shown the gift the lad had picked out for her. In typical dinky fashion she wasn’t shy about letting everyone know she wasn’t interested at that time. “I don’t want to” she said, and walked off again to find the lad. It was so nice to be with people who just understood.

The kids had a snack, and dinky again refused to even look at the sticker book. I wasn’t about to force the issue.

We made our way to the Circus. I didn’t want to put dinky on the reins as I thought that she would get upset if the other lad got to run down to the entrance. So I told her she had to stay by the lad. Which she did, they just both ran quite far!

We got in and in the entrance part there was cotton candy, popcorn, and a sweet and a drink stand. Of course both kids had to have cotton candy! Both myself and lovely mum knew neither kid would eat it, but I also knew dinky wouldn’t share one, and she has this licking thing which probably wouldn’t have been the nicest thing for the lad to have to share. So they got one each and predictably they both ended up partially eaten and in the bin!

We had ringside seats, and were sitting right in front of the ring. Someone was selling some flashing light toys, so I nipped off and got one each for them.

When the show started I was drawn in by the kids! Dinky was so excited and happy, she barely knew how to contain herself! She was jiggling and jumping and laughing. The lad was deadly quiet and still mesmerised by those in front of them. Up until the interval I was astounded at just how well both kids were handling themselves.

The interval was ok, dinky and the lad were using their new toys to fight each other. I am so used to telling dinky to stop because she is extraordinarily strong and she is a sturdy build too, she normally bulldozes other kids. So I feel like I am forever telling her to be careful and play nice. Not many parents are as understanding and so many are the opposite of lovely mum. Normally parents say that she needs to learn to calm down, not that their kids aren’t as fragile as I may think. I am still getting used to being around people who treat dinkys behaviour as part of her, and that are used to it.

Dinky said something I only half caught and she ran off back into the show. I had to bring her back. Then when we did go back in she went off again, but I found her easily enough. They had moved our chairs as they needed to put the safety netting out for the trapeze and dinky got confused. We found our seats and sat. I let the lad paly with my phone as dinky sat on his dad’s lap. I cant exactly remember what set them off, but dinky wanted the phone back and tried to snatch it. I was telling her no and trying to get her to let him have it. The dad in the end just took the pair of them off to get ice cream. Problem solved!

When they came back dinky made me laugh! She was eating the cone bottom to top and was so engrossed in her ice cream that she was missing the show! She had already said that the lady on the highbar was her favourite so far, (she also said she was her sister! Which was funny!). So I couldn’t believe she was missing it to much her ice cream. Actually, yes I could!

Toward the end I think dinky had had enough. She was playing up trying to hang over the edge and I could feel the rise in her, but she also wanted to stay. In the end we left a little early, only a couple of minutes.
The dad went off to get the car as the heavens had opened. Dinky and the lad were starting to get at each other and it was a good place to end it. Dinky had definitely had enough. She was holding my hand and kicking my legs and head butting my hip for no reason. It was a relief to get in the car.

The dad was very kind to drop us home after. Dinky was tired (I am not surprised given that she barely slept last night and was up at the crack of dawn this morning), she lay on the sofa for an hour and a half just chilling out watching Netflix.

I was very grateful that we had been invited out. We don’t get many invites due to the way dinky can be. Even the mum of the child she has known for 4 years doesn’t invite her to parties or days out anymore, (also for someone with a child diagnosed last year with high functioning autism you would think she would be more accommodating and understanding). I guess it doesn’t work like that. I guess I am just happy that dinky enjoyed herself and I didn’t have to constantly apologise for her behaviour, or for things she said. Also I think the lad is pretty cool and very adorable!

Tomorrow she is off to watch all stars with the special needs group at the cinema followed by mc Donalds. It will be the last day of activity as my dad still isn’t 100% so the weekend will be an indoor, sticking, Netflix,… basically whatever dinky wants to do weekend.

As for her homework. I have tried a few times, but I just end up as pencil target practice and she ends up under the table.

I will give it one more go each day. If she does some, fine, if not, I wont push once she goes under the table.

integrated services visit

I am really starting to like this integrated services lady.

when I first imagined her turning up, I imagined a woman, late 40’s, brown hair tied up in a bun, glasses, brown tweed skirt suit with shoulder pads, name tag precisely placed, and a clipboard.

In reality I got a late 30’s, dyed blonde hair (with visible roots), trousers and flowery top, back pack, lanyard with name tag the wrong way round, no clipboard.

I imagined the worst, I imagined bad parenting, my past, our homelessness to come up and be used as a reason for the way dinky is.
Instead I got ‘you seem to be doing your best for dinky’.

I didn’t know what to expect today. I didn’t know how dinky would react. It could have gone many ways

  • She could have been the ideal compliant child (making me look crazy!)
  • She could have jumped all over the lady
  • She could have hid the entire time
  • She could have tried to be herself

What did she do?

She was ultimate PDA child!

The lady came in, she got some pictures out for dinky to colour in. Dinky didn’t want to colour. So she read the lady one of her reading books instead, when the book was finished she tried again, dinky decided to try the reading again. The lady asked if she had any colouring pencils. I got dinky’s colour box out. Which Dinky had filled with toys. She started showing the lady the toys. The lady coloured a little while dinky lined up her toys. The lady asked dinky to colour with her, dinky showed her all the colours and said she couldn’t because she didn’t have the right one. She showed the lady how her pen had a click top. I was reading the new CAF form we did on the last visit (chuckling at the demand avoidance behind the paper). The lady started asking dinky about school, dinky then picked up a yellow felt tip and said she was going to call it golden. She completely ignored the lady and started colouring, Again I was chuckling.

Unable to stop the questions she answered with wrong answers. Then she went off into fantasy, she told an awesome story about a dream about a wolf that snuck in her room to eat her. But she caught it by the tail and split his head in 2 (don’t ask me where she got that from). He wasn’t alone, he had an army! An army of 152 wolves and she did the same to them, then there were 55! Then they had babies, the babies were very small. She wanted to keep one of the babies.

I tried to make the lady a cuppa, but dinky wanted to come in with me to make it. I tried a number of things to get her to stay in the living room but she didn’t want to. So I got my ipad and dinky showed the lady pictures from London zoo.

Then Dinky coloured a little more, then decided she had, had enough and turned the TV on. The lady commented on the fact that dinky is a character! Oh yes!

Dinky then wanted a film on. I said she could when the lady left. She then hit punched me twice, I said she would get a warning if she carried on. she punched me again, I went to the warning chart (which doesn’t work but I use it anyway, it was good for her to see how useless it is), dinky took the warning off and threw it in the bin. I tried to stop her going back to it, she kept hitting me, screaming and reaching full meltdown, no-one needed that. So I backed off, let her trash the chart. She grabbed my keys and ran upstairs with them. I explained that me stopping her would have added fuel to the fire. I told her that if I leave her she will calm down and that is what happened. She was jumping on me and cuddling and slapping my leg at the same time, but apparently she wasn’t the one smacking, it was a ghost.

She made noises so that the adults couldn’t have a conversation and tried to control both of us.

I felt dinky had shown enough at this point to show the lady the PDA criteria.

She was wide eyed and nodding. She asked if I was going to show the paediatrician this on the 9th of July for our appointment, I said yes, although I was semi reluctant as I don’t want the paed to think I was consulting doctor google.

She agreed dinky fit the criteria and we went through just the bits she had shown.

The demand avoidance for the colouring- distraction, suggesting alternatives, making excuses, arguing, before withdrawing into fantasy.

Dinky appears sociable, but it is obvious she struggles socially.

She said it was amazing how quickly she switched from content to violent with no provocation.

I had given her the SaLT report and she nodded at the language delay.

After the London zoo Pictures dinky shoed her the ones from her 4th birthday, which everything was space. Obsessive behaviour.

Controlling, yes.

Behaviour modification not working- not only the warning system, but I showed her the incident reports from the 4 hours yesterday at the leisure centre.

She said she was going to amend the CAF form. I don’t know if she is going to add the PDA into it. If she does she does, if she doesn’t, it can get brought up at our first TAC.

She said she was going to phone the school next week, as she couldn’t get hold of the senco the week before half term. She is going to ask what support they have put into place. I laughed and said none. She smiled and said yes, she knows they haven’t, but they might after she speaks to them.  Also the will have to in consideration to the SaLT recommendations.

Have I mentioned that I quite like this lady!

Right now Dinky is in my room with the curtains shut, watching Netflix on her 7 inch tablet I got with her DLA. She desperately needs some down time. Especially as she has swimming later.

It looks as if this lady is really on our side!

Well, that could have gone better….

is the tag line of my life!

Over dramatic… well, today…

Dinky had an ok morning watching Netflix, she just ate non stop. Honestly if you saw her she is in no way overweight it is baffling!

I went on face book for a while, put some washing in, harmless you would think… except I didn’t check thoroughly and a pair of night time pants (pull ups) that were dry (before they went in) ended up in the machine. Dinky has this ridiculous idea that if she didn’t wee they don’t need to go in the bin. So normally I would put them in the bin when I take her trousers to the wash basket.  However she must have been helpful and put them in herself and I had forgotten. Either way all the clothes had bits of pulls ups all over them. After I put the wash load back on and hung it out I decided it might be a good idea to empty the filter. It was roughly 10.30am and we didn’t have to leave for activities until 11.30am.

So I undo the filter and almost flooded my kitchen! I had a ton of gunk (saturated pull up lining mush) and water al over the floor. I am trying so hard not to scream profanities as Dinky was in the next room. I had to grab the kitchen towel to try and clear the gunk, however seeing that I’m in crisis and dealing with water Dinky asks for a drink. Cue awful parenting..

Me: WHAT??? CANT YOU SEE I AM A LITTLE BIT BUSY TRYING TO CLEAN THE FLOOR RIGHT NOW???

Dinky: ALRIGHT! I need a drink though, can I have one in a minute?

Me: In a minute, sorry for shouting

2 minutes later… I am still trying to get the water off the floor the cap wouldn’t go back on properly so it was still leaking as there was more water to come out, I was just trying to catch the water with the washing up bowl…

Dinky: Can I have a drink now mum?

I turn to look at her moving the bowl and re-soak the kitchen floor!!!

It was 11 am, we had to leave in 30 minutes, dinky wasn’t dressed, my kitchen floor was a puddle, dinky needed lunch and I hadn’t got myself sorted as my plan was to do that during her lunch.

I grab a plate, put some cocktail sausages, yoghurt, cheese and cherry tomatoes on and tell her to eat (with a drink). I found the mop to do the floor, pulled the washing machine out then mopped behind it, pushed it back in (admiring my own strength, and grateful that I could pull it out as last time my washing machine leaked in a different place I got damp and it spread). Meanwhile dinky had finished her food, and was dressed to the waist, I asked her to grab a t-shirt from her room, she came back with a jumper. I told her that she is going to activities and that she will be indoors running around and needs a t-shirt. She got annoyed, and I couldn’t make out the noise she made next but I’m guessing that she wanted to wear the stripy one and it was a t-shirt. I sent her back up, she came down with another jumper. I had finished mopping. So I explained the difference between a t-shirt and a jumper. We picked out a t-shirt, it was 11.35. She got ready quick (for a change!), and we left at 11.45. We just made the bus, got there at 12.25.

I signed her in to the activities and they said pick up was 5pm, I explained that she might find it a little daunting and not to push too hard with instructions. I got a little worried when there seemed to be a lack of adult supervision. It was kids watching the kids. However the plus side was they would have the energy to run after her!

So I left her watching Ice age while the day kids ate lunch.

I got home, had a bath, some lunch, printed off the Speech and Language report, and emailed Dinky’s grandma and let her know the outcome.

I left at 4pm to get Dinky (it is always quicker on my own!).

I was thinking about the Speech and Language report a lot.

When I got to the place it was 4.30pm. They were just moving the kids to the crèche when Dinky saw me. I went in with them and heard the ‘oh too familiar… can I have a word?’

She was there for 4 hours, she got not 1, not 2, but 3 incident reports.

Report 1

violence- Punched child in the stomach over a small argument

action taken- sat out, spoken to and allowed to join back in

outcome- joined in games again

Report 2

unacceptable behaviour- Threw a shoe at member of staff and spat at him

action taken- was told to sit out and calm down for a few minutes

outcome- rejoined

Report 3

Behavioural issues- ignoring staff, talking back, ignoring safety (for herself), and ran off around the centre

action taken- calmed by a member of staff, spoken to.

outcome- joined in games at the end.

He said that if it wasn’t on her paperwork that she attend the special needs swimming, they would have banned her for the rest of the half term holiday. I told him that luckily for them, I don’t think mainstream activity days is the way forward, and I have finally realised that. He asked if I was going to put Dinky into the special school round here, (apparently his mum works there). I said if her new school goes the way of her last then you never know! He said that he has seen kids have meltdowns like the one where she ran off.

I got a copy of all three reports and had to get dinky to the café for dinner. I finally managed to get her out of there.

we watched the rock climbers as she ate, then got the bus. Dinky was in a foul mood, she tried to say that the guy was lying and she didn’t do any of it. When I told her it didn’t matter, it was done and dusted she disagreed. I got head butt and punched several times. She was picking fights with me all the way home. When we got home she hid under the table and refused to come out and get ready for bed.

It took a while but I got her ready and she is now up there playing. I don’t think she has had time to wind down yet, so I am leaving her to it as usual.
I am now fretting about what her behaviour is going to be like when the integrated services lady comes round tomorrow morning, how she is going to be at swimming, and the rest of the week. I don’t want her to get progressively worse. I think the weekend I am going to have to strip it back to just us and let her do as she needs ready for the last 6 weeks of EYFS.

Although it will be interesting, I am going to have to talk to the Senco again (which doesn’t fill me with joy), about the Speech and language which needs to be written into her I.E.P that they don’t know whether or not she will have yet (although I expect she will if the recommendations are followed- which probably wont happen until September)

 

I get moments, like just now, when I realise just how hard it is not to have anyone to share these worries with. My dad doesn’t really understand and he is still not 100%.

I keep going round in circles. One minute I am dead sure Dinky has special needs and that she will get a diagnosis of PDA, then I think I am a crap parent, that I had no role models and maybe I am doing it all wrong. So I push her and push her. Then like today she snaps as she cant cope and I knew it would be difficult but I wanted to give it another go, one more try at mainstream activities. If I carry on like this I am going to make her worse.

I feel very isolated and alone in all of this. All of these realisations.

 

 

Ok that’s enough of that, I have been trying to write this for 2 hours. Dinky is now asleep! I have work to do as dinky trashed the place when getting dressed.

 

Until tomorrow….

 

Speech and language assessment results…

So, earlier today I posted a blog about the Speech and language assessment… Well, about an hour ago I received the report… I have edited names and deleted any personal information for anonymity purposes.

 

Speech and Language Therapist’s Report

 

Name: Dinky                                    Date of Report: 27th  May 2013

C.A: 5yrs 3month                      Date of assessment: 27th May 2013

____________________________________________________________________________________

 

Dinky was assessed at the request of her mother. The assessments were undertaken in her own home and completed in one session.

There were no examples of refusal and she responded positively to praise.

Listening and Attention

 

Dinky displays a good ability to concentrate upon her own agenda.  Attention to adult directed tasks is similarly well focused.

She shows a positive interest in others and visually stimulating materials, but may be disturbed or distracted by auditory and visual stimuli.

Stage 5 – integrated attention – can attend fully, but for short spells only –

approximate age 4-5 years.

Comprehension 

Dinky uses visual, auditory and situational cues to good advantage and may give the impression of adequate understanding of spoken language.

Formal assessment of understanding of spoken language was undertaken using the Test for Reception of Grammar (TROG 2-E).

The TROG assesses understanding of grammatical structures, e.g. “The boy is running” as opposed to walking/not running.

It is presented, via computer, with 4 pictures to choose from, the target picture, a grammatical error, a lexical error and a distracter. 

Dinky achieved a raw score of 6 blocks, an age equivalent 4yrs 09mths, percentile rank 32, standard score 93. Results were somewhat scattered.

She was able to decode reversible in and on, “the cup is in the box”, reversible svo, “the cat is looking at the boy, not only X but also Y, “The pencil is not only long but also red” and reversible passive, “The duck is chased by the lady.

She experienced difficulty with three elements, “the elephant chases the duck”, four elements, “the horse sees the cat and the book”, relative clause in subject, “the man that is eating looks at the cat”, reversible above and below, “The cup is below the star” and comparative/absolute, “the duck is bigger than the ball”.

Expression

 

Dinky freely uses spoken language to convey her thoughts, requests and observations.  However, she presents with many false starts and revisions, indicative of syntax and word finding difficulties.

Formal assessment of use of spoken language was undertaken using the Renfrew Action Picture Test.

The RAPT produced a raw score of 23 ½ for information, age equivalent 3yrs 6mths, where 24 is the mean of the range19-27 and a raw score of 20  for grammar, age equivalent 4 yrs 0mths

There were examples of syntax errors, e.g.:

“He’s, he’s just trap er the mice”,

false starts and revisions:

“The … the basket …. the carrier bag…. with all the tomatoes in, or apples, are falling out because it has a hole in it.”

and auditory confusions:

“It’s tungled up” – confusion with “tangled”, target word “tied”.

Speech and Phonology

 

Dinky presents with normal voice quality. 

No feeding difficulties are reported. At rest the lips are closed, the tongue does not appear over large and she does not mouth breathe.

A full oral examination was not considered appropriate at this time, but there does not appear to be any weakness of the oral musculature.  There is no reported drooling or choking. Tongue movement is appropriate

Articulation is mostly mature with only the substation of /s/ for /sh/ noted.

 

Pragmatics

 

Dinky is aware of the rules of turn taking within a conversation.

She shows a positive interest in others and is able to use appropriate eye contact and

non-verbal communication.

She is not always aware of the listener’s needs.

 

Conclusion

 

Dinky presents with slightly delayed reception of grammar.

Expressive language is more significantly delayed, with examples of word finding difficulties.

This linguistic profile is strongly indicative of a specific expressive language disorder.

 

Recommendations

As a result of her linguistic profile, Dinky is a child who is likely to fall behind her peers in all areas of linguistic and social development.

She requires specialist speech and language therapy input, devised and delivered by a speech and language therapist on a weekly basis and supported by an experienced multidisciplinary team.

Skills learnt in an individual setting will need to be generalised to other school, home and social settings. 

The therapist should input to termly review and setting of I.E.P. targets.

Therapy will address all areas of speech, language and social development, but with particular emphasis upon:

  • Decoding of      syntax.
  • Expressive      Language – development of the use of spoken language.
  • Sequencing      Skills – both auditory and visual.
  • Techniques of      word finding.

I confirm that I have made clear which facts and matters referred to in this report are within my own knowledge and which are not. Those that are within my own knowledge I confirm to be true. The opinions I have expressed represent my true and complete opinions on the matters to which they refer.

So there it is.

I was a little shocked at parts. 3yrs 6months for 1 part and 4years 0months for another. It is further behind than I thought. I was only kidding earlier when I said 18 months, but the information at 21 months behind is worse than I had anticipated. I guess it is part and parcel though. It makes me feel slightly vindicated. Obviously I would have been much happier had I been wrong.

The recommendations were a bit of a shock. Weekly speech and language sessions, she didn’t once mention that she was available for speech and language sessions, nor did she try to give me costings, she knows I will ask for treatment on the NHS. So I am 100% sure that this is her professional opinion and not a private SaLT wanting more money.

Hmmm,

I think the term is ‘be careful what you wish for’, this morning I just wanted the results.