Can’t or won’t?

4 03 2014

As GM walks by the living room door she hears CD saying “you wouldn’t be cold if you hadn’t lost your fleece at school Lolly.” Unusually he sounds irritated. GM sighs … It is irritating. The mostly functional parents have had to replace so many jumpers and cardies, shorts and sports tops since September. Even a pair of (expensive) wellies.

It seems that Lolly is expected to be able to keep track of her clothes and equipment now that she is in year 1. The mostly functional parents have an on going conversation about whether Lolly can keep track. She is not as emotionally mature as many of her class mates, nor educationally. Developmentally she is probably about 12 to 18 months behind many of her peers. GM wonders if that is ‘all’ it is though, or whether there is more to Lollies apparent inability to keep track of her belongings.

At home she often looses her current favourite object or toy, and will have the bemused patents searching for days. She often puts things in a safe place and is then unable to remember where it is.  These things will often turn up weeks later, in bizarre and unusual places. Like finding the golden purse with current object of desire wedged between some DVDs on a shelf.  This ability to loose things extends to her most precious blanky and toy doddies. Her ratty, scratty holey blanket, that came home with her is no longer allowed anywhere other than home or in the car, due to the many retraced steps and waves of relief when it has been found.

After bed time CD and GM again mull over Lollies tendency to loose things. GM mostly believes that the loss of yet another pair of glasses is probably deliberate, but is not so sure about the clothes. They talk in circles, not really feeling that they understand what, if any, the problem is.
….
A few days later CD returns from Lolly’s parents evening meeting. Lolly is lavished with praise for the progress she is making in phonics, in particular how well she is doing with her blending.  CD tells GM that Mrs F is really pleased with the progress she has made, but .. But they continue to be concerned about Lolly’s ability to retain her learning. Not only learning, she has not seed to have internalised any of the classroom routines, and needs prompts to move between activities frequently. CD asked Mrs F to be more specific, and she described a particular daily routine. Every morning all the children in KS1 split into ability groups for phonics, with Lolly being in the reception group.  At the end the children return to their classroom, get a book and sit on the carpet to do independent reading for 5 or 10 minutes. Every day, Lolly returns to the classroom and will stand, confused, until the teacher or TA directs her to the books and carpet. Every day!  The mostly functional parents are quite shocked to hear that she has so little grasp of the class routines.  This seems to be much more significant than a penchant for loosing her jumpers.

CD delves into Lolly’s book bag … “This is some of the good work Lolly has been doing” he says, “and these are the forms we need to fill in for the needs assessment that they want to get in motion.”

GM goes to bed feeling quietly sad and bad. She wonders if they would have picked up on this earlier if LML’s significant needs hadn’t overshadowed Lolly’s?

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ADHD

18 09 2012

GM arrives at the clinic with LML, who clearly remembers the environment from their previous visit. LML immediately heads for the water cooler. The waste tray is overflowing which surprises and fascinates LML. GM manages to distract her from the cooler for 5 minutes, until LML decides she wants to go to the toilet. GM shows LML to the toilet at which point she starts to shout like she is being slaughtered, so they return to the waiting room.

By this point GM has realised that she, indeed needs to pee. LML wants “to go wee” again so GM again takes her to the disabled toilet.  This time, when she opens the door she maneuvers LML into the very spacious room. LML is shouting that she does not need to wee … actually she is shouting “NO! Nononononnooo!” GM explains that LML does not need to do anything, but “mummy needs a wee”. LML continues with her “no’s” and GM has to pee at the same time as preventing her daughter leaving the room while she is “doing the business”.

Soon after, they are called from the waiting room.  They follow the nurse and psychologist to the (toyless) room. The marvelous nurse says “shall we find some toys?” to LML. She spends most of the rest of the session playing, throughout the whole of the CAMHS unit, with LML – whilst also managing to get her height and weight (BIG brownie points to Nurse Sula!).

GM and the psychologist discuss LML’s medical history and the immediate prospect of a prescription for stimulant medication.  When LML pops into the room, the psych attempts a blood pressure reading, which is not successful, even on GM’s knee. On the next passing GM is ready and gathers LML onto her knee, holds her close (gently restraining her), and whispers to her, telling her what is happening, how long it will last, that she is OK and loved and it is OK .. there will be a squeeze, it’s OK, she is safe, its OK .. through this LML is tense but trusting. She is tense but holds her sooo tense body close to GM’s; she plants a hard kiss on GM’s cheek, then again and again. She moves her mothers head so that she can kiss her mouth. She squeezes her mums face and all the time GM reassures LML that “it is OK, I love you, you are safe” .. and then it is over and LML is off again.

The details of the month trial of ADHD medication is agreed, and the psychologist asks GM how she is feeling about it.  GM manages to express some of her reservations and concerns (again), and talk about possible side effects.

LML is reshod and encouraged to tidy some of the toys that she has scattered throughout the room and building. The psychologist leaves to make out the prescription as GM, LML and nurse Sula go back to the waiting room. The psych comes back and hands the prescription to GM. Mother and daughter leave, call into the supermarket on the way home for bread and wine, and go home.

Aunty J has cooked dinner for the girls (she took Lolly to the playground from school, which involves another story).  10 minutes after she arrives home LML is sitting down to eat.  Aunty J goes into the kitchen to get the girls a drink and finds GM sitting on a child’s chair crying into a tea towel.  She strokes and pats her head as she sorts out the drinks and kisses her as she leaves the room.  GM is very grateful.





Changing of the Guard

6 07 2011

You’ll be seeing a different doctor today, the old one has moved on to pastures new” the administrator informs the Mostly Functional parents as they begin the routine that is the six monthly child development appointment.

The new doctor seems friendly enough, she soon starts to examine Lolly. She questions the Mostly Functional parents about Lolly’s health and behaviour. “I think she needs additional support. I’ll contact the nursery SENCO to make a referral for early years funding.”

The kids are bouncing around the consultation room, in to everything. GM and CD spend a lot of time stopping them from playing with the medical equipment that is all over the room, the sink, the giant paper rolls, the surgical gloves, the curtain. They tag team it, without any need for discussion or agreement.

It’s soon LML’s turn. After a number of routine questions the paediatrician focusses in on LML’s behaviour. “Is she always like this?” she enquires as LML flits from one prohibited activity to another.

I would like to refer her to the Child & Adolecent Mental Health Service (CAMHS), it’s difficult because many of the behaviours for Attachment Disorder are also seen in ADHD. I think we should assess her for ADHD, medication may help slow her down and focus more, making it easier for her to access education.”

Grumpy Mum is quick to say, “When we adopted LML we knew her behaviour might be challenging, we accepted that that’s who she is. I’m not sure either of us would want to manage her behaviour with drugs.”

The parents accept that this is a route in to CAHMS though; something they have been talking about how to achieve for some time. The Mostly Functional parents agree to complete a Connor’s Parent Rating Scale. Not convinced that the paediatrician, after less than an hours consultation, has made a correct ‘diagnosis’, they still see the benefits of the route she is proposing as it’s likely to open up new opportunities for support for the family and LML.





Little Steps…

30 06 2011

It came as no surprise to the Mostly Functional parents that their application for a Statutory Assessment of LML’s Educational Needs was turned down. The schools Educational Psychologist had hinted as much at their last meeting. What they didn’t expect was the way the conversation would go at the meeting to explain the Local Authority’s decision.

The meeting was with the Authority’s Assessment Officer, the Senior Educational Psychologist for the Area and the Schools Special Educational Needs Coordinator.

The Assessment Officer explained the decision making process and that he had, with some reservations, recommended an assessment because LML has above 50% developmental delay. In his words, “My view was that if we didn’t do it now, looking at the case history of LML, it was very likely we would have do it in the future.” This then went to an independent officer who reviewed his decision and advised not to proceed to an assessment because LML had made “significant progress” within the school setting. A panel of senior officers then made a decision not proceed.

The Ed Psych. explained that had been in the school for the past two weeks undertaking an assessment of the school’s overall provision which had nothing to do with LML. However, he had observed LML on a number of occasions “You can’t help but notice her” he said. He also stated that he had not been given the Authority’s reasons in the paperwork sent out prior to the meeting and it was only now that this had been explained to him. Given his observations, he said, he would like to explore what was meant by “significant progress”.

The Mostly Functional parents exchanged a knowing look.

The SENCO then explained that in the three months since the school submitted their report for the assessment LML’s behaviour had deteriorated and that much of the progress they had initially observed had either stalled or gone into reverse.

There was then a lengthy discussion about LML, her development and behaviours which illustrated why the Mostly Functional parents had submitted the application in the first place.

The Assessment Officer observed that some of the contributing factors to the decision were that some of the reports the Mostly Functional parents had submitted were about a year old, that because she was in reception it was less academic, more free flowing, and the panel thought that the support provision of the school in this sort of setting met LML’s needs

The Ed Psych. proposed that we wait until the new academic year, when LML will move to a more structured curriculum where everyone acknowledged that she is likely to struggle in the setting and get a fresh set of reports from the professionals involved in her case. They would then submit a new application.

The Assessment Officer, who may or may not have nodded his agreement, concluded the meeting by explaining to the Mostly Functional parents that they could of course appeal against the decision based on the evidence they have submitted so far.





3.15pm to 5.15pm

24 06 2011

“I can cope with talking to her teacher about her attacking another child repeatedly, whilst they tried to stop her…”

“I can cope with  her throwing herself around on the floor of the bus, shrieking, with everyone looking at us…”

“I can cope with her pouring the water out of the jug over the window and floor as soon as we got home…”

“I can cope with her constant shouting and shrieking…”

“I can cope with her attacks on Lolly…”

“but I am fucked off that we can be having such a lovely positive time, and she takes a tiny opportunity to cover the living room in soy sauce.”





play time

8 06 2011

LML comes into the mostly functional parents bedroom at 7am, followed by Lolly.  She has one of their bags over her shoulder.

“Me going shopping,” she announces,  “bye bye, shopping now” she says as she leaves the room waving, with Lolly following behind her, also waving.

Sometimes it’s those simple things that give so much hope.





where bee be?

16 05 2011

“Where bee be? Daddy, where bee?  Bee be poorly mummy?” The stream of questions from LML begin as soon as he family walk onto main road.  The previous day they had seen a big bubble bee sitting on the pavement, and the parents had told LML that it might be resting or poorly.

As the family approach the spot from the day before they see the same bee …

“Bee poorly?  Bee be dead?” LML asks, “Lolly, bee be dead. Bee poorly!”

“Bee poorly!”repeats Lolly, looking at her sister, “bee dead?”

“Bee be dead, Lolly.  Bee poorly.” Confirms LML.

As the family leave the dead creature behind LML asks “Where bee be?”

“Bee poorly, bee dead” answers Lolly knowledgeably.








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