1st Diagnosis anniversary… What has changed?  

Sometimes I see posts on Facebook groups or hear people say that nothing really changes after diagnosis and there is no support. I feel for those people because for us, things have changed since diagnosis and the majority of it is all good! 

This time last year we were living in a first floor flat, I didn’t drive, Dinky was out of school, we were getting 4 weekly reviewed funding for respite, and her statement of educational needs was not even near ready! 

Now? Well, since the diagnosis we have secured a ground floor flat, with garden! We have a car- as I learnt to drive and passed my test. Dinky has a statement and is in a specialist school with 1:1 support that is currently meeting her needs and she is happier than she has ever been in an education placement! We have a social worker and a yearly personal budget for respite, which is flexible and really meets her needs. 

Dinky has been signed off from the paediatricians at the CDC and is now ‘under CAMHS’ which is pretty pointless as all they do is monitor medication, and the ADHD wound Dinky up the only time she has been. Do we need the support of either? Not really, there isn’t anything else they can really offer. Strategies and everyday things are up to me and the school to maintain, is there anything they can do for us as a family? No, not really, just make sure the meds are the right ones and the right dose and that’s it. So I don’t mind not having appointments all the time, frees me up to help other families with children with special needs, whether that is fighting for the CDC to actually start assessing for PDA again, or telling families how we managed to get certain services involved, or how we got the statement or what to expect at a DLA tribunal. (Which I have just realised I never mentioned- I went to tribunal over Dinky’s mobility element of the DLA and didn’t have to say anything the evidence from the schools, the statement, and the social worker was enough for them to award it without asking me anything.).

Things are still tough, Dinky still has major meltdowns, and recently shut downs (where she doesn’t talk, barely even uses the makaton she is learning at school, doesn’t want to interact and just engages in repetitive vocal and proprioceptive stimming). She still has bad days at school where she needs to be physically restrained, and she even had a day where I actually had to pick her up from school because she went into crisis at home time and the taxi had to leave and she still needs to be restrained in public at times. 

I think perception has changed since diagnosis. An understanding school, validation for me, my dad finally accepts his granddaughter is autistic and no longer tries to prove he is the adult, a social worker that asks for PDA info, all make for less stress and less battles.

We still get ignorance- Like the other week, I had parked in the disabled bay, as I am entitled to, using Dinky’s disabled parking badge (blue badge). I was getting dinky out of the car, I hadn’t managed to get to the boot to get her special needs buggy out, and along came a guy, must have been in his 40’s, he said “that parking space is for disabled people!”. I ignored him, and went to the boot, on my boot, is a sticker saying ‘not all diasabilities are visable’, I stood next to it when he said “you don’t look disabled”. I pointed to the car sticker, and said, “I am sorry but you seem to be under the impression that to have a blue badge you must be in a wheelchair and not be able to walk”. I got Dinky’s special needs buggy out, sat her in it, and said “is this better?”. Needless to say he didn’t answer and walked off. While I commend people who want to keep the integrity of the disabled bays, they have to understand that they might not always be able to see the disability, so it is probably best not to say anything. 

It feels good to know things are really starting to come together now that I have fought for Dinky and won. 

When I started this blog things were pretty rubbish. At times I admit that I didn’t always handle things correctly, hindsight is 20:20 after you have been through a tough time. I probably still owe some apologies which is one thing I am working on, some I have already given, and some things I refuse to apologise for. 

This next year is going to be even better than the last as there is no more fighting for Dinky, and I will have the energy and the means to give her everything she needs.

So here is to an even better year!

I refuse to celebrate one thing about my autistic child

Since the word ‘autism’ was mentioned to me it feels like I have been forced the other side of a window watching the masses celebrate their children’s typical achievements while my beautiful little girl seems to not move very far forward. 

The autism/special needs community is all about revelling in the little things that the parents of typically developing children take for granted or even overlook. 

I do this to a certain extent. I have been known to victory dance at Dinky trying a new food. Or over celebrate certificates from her special school for sharing a toy, or being a good friend to a class mate. At 7 most parents would scoff at their child receiving such a certificate but hey, it is a step forward for Dinky. 

However there is one thing that the school have been known to celebrate which I will never do and quite frankly will never do. 

Dinky has PDA, which means her anxiety is so high that she finds it really hard to comply with demands made of her. 

Now that Dinky is settling in at her new school, and a mixture of them using the right PDA strategies and the start of ADHD meds, she is starting to be able to sit for longer periods of time and do some of the work. 

School are celebrating this. Me, not so much, but I do celebrate in another way! Let me explain. 

This is what/why I don’t celebrate

  • Dinkys new found ability to ‘cope’ is just that, it is coping, she isn’t enjoying herself but is merely holding all that anxiety in and exploding or retreating into herself at home or later in the day/week- not exactly a win
  • Dinky is not a big fan of being rewarded for compliance and therefore I don’t think it is appropriate that I celebrate her complying at a cost to her own wellbeing. 
  • Why celebrate the act of complying, surely the outcome of that is vastly more important! 

And this is what I celebrate, 

  • I celebrate that Dinky has been baselined in most areas for the first time in education and that now we can actually monitor progress, because she managed to complete some testing. 
  • I celebrate the fact that she is making progress with the speech and language therapist because she will now attend the sessions
  • I celebrate the fact that she can formulate a ‘d’ properly now as she is better with with being taught- (hopefully we can sort the capitals in her writing next)
  • I celebrate that for the first time she has been assessed properly, and even more so- celebrate Dinky being ahead in something for her age instead of being 1-3 years behind (reading- yup my kiddo is ABOVE the level expected for a 7 year old! Go Dinks!)

I celebrate the achievements from the compliance but I will never, NEVER celebrate the act of complying. 

I also think school are too busy celebrating and getting ideas of how to push her further that they miss the signs of high anxiety and then a massive meltdown occurs and I get another physical handling notice (retraint notice) from school. Little- moderate meltdowns are normal for us, and usually don’t require physical restraint as it tends to be throwing stuff and stuff can be replaced. So for the amount of physical handling notices she has are far too many. I don’t assume she will never have a major meltdown at school, but they are pretty much weekly sometimes 2 a week and always following a period of compliance at school. I’ve noticed a big difference in how Dinks is at home, she is much more explosive lately, and while sometimes I have to restrain her, I hadn’t needed to do a full sit down and restrain her fully, type in a while like I did last weekend. 

I really think the cost of complying at school needs to be taken into account when they see it as a step up a ladder they have made. They really need to see it as being on a bungee cord and the harder and faster they get her to go at once the harder and faster she will fall back. 

   
I think the school needs to be more careful and take a slower approach. They are more likely to get more out of her if she doesn’t shut down for as long after each bout of compliance to learning. 

Learnign with PDA is a marathon, not a sprint

My daughter is autistic with ADHD and sensory issues- there was an issue with my parenting

Dinky has been diagnosed with autistic spectrum disorder-pathological demand avoidance, attention deficit hyperactivity disorder and sensory integration difficulties (also known as sensory processing disorder).

Or for short 

ASD-PDA, ADHD, and SPD. 

Here in the UK there is a documentary series called ‘Born Naughty?’ (Click here for some info on the programme which features children with ASD-PDA) 
 There are so many comments like :

 ‘No child is born naughty-it is a parenting issue.’

To an extent they have a point, but not in the way they think… Let me explain…

There was an issue with my parenting… I was made to believe that the only right parenting strategies were those for typically developing children. That was mistake number 1.

I read up on challenging children, watched supernanny and implemented lots of new behavioural strategies. They didn’t work. 

Then I found out about PDA, had my lightbulb moment and this came with new parenting strategies, ones I hadn’t tried. I had spent so long using the wrong parenting strategies, I was parenting wrong! 

I needed to be parenting for an autistic child with PDA!

I changed my parenting, I made lots of visuals, gave her different ways to communicate when she couldn’t, changed my wording when I needed her co operation, I gave her choices within her routine, and allowed her to feel more in control.

What a difference! School though we’re still using the wrong strategies, she wasn’t learning, she was labelled ‘naughty’, they refused to use the ASD-PDA strategies in favour of typical strategies and even worse, strategies for behavioural disorders, which had the opposite effect. The only reason she was seen as naughty was due to the ignorant assumption that the behaviour is just naughtiness rather than another form of communication, and they blamed her for their strategies not working. When in reality if you have tried to teach a child something 100 times and they still haven’t got it, it is not the child that is the slow learner. Thinking that there is nothing you can change about the way you deal with behaviour is the biggest mistake one can make.

Meltdowns in public started to make sense since the sensory integration was identified and I changed my parenting. I gave her ear defenders and sunglasses, I allowed her to engage in her sensory seeking and just made sure it was safe, instead of getting upset and telling her off for spinning or bouncing when people glared as she was expected to be still. I learnt to ignore people more, children should be allowed to move and spin and bounce and flap!

Dinky then got her ASD-PDA diagnosis and now goes to a special school, things are so much better, the right strategies are being put into place. She is no longer labelled ‘naughty’. She is treated like a child with ASD-PDA, ADHD and sensory integration difficulties! 

Now she has the ADHD diagnosis, I have put in more activies in our routine to help release some of that built up energy. She is on medication and can now concentrate and is learning in school with the right strategies that take all of her diagnoses into account. 

You wouldn’t use parenting strategies for a 15 year old on a toddler, or toddler strategies on a 15 year old, so why use strategies for typically developing children with children with a diagnosed neurological condition? 

This is why I hate diagnosis of neurological conditions being called ‘labels’, it suggests that is the end of it. It isn’t … It is the beginning. It is a signpost to the right strategies.

So yes, it is a parenting issue that only diagnosis and understanding can solve. 

No child is ‘born naughty’!

PDA awareness day and Dinkys annual review shows that awareness is sorely needed! 

I had Dinkys annual review yesterday. 

Parents evenings in both mainstream schools haven’t exactly gone down very well. Actually I only got invited to one, and they just handed me her ‘suspected levels’ at a TAC meeting in the second mainstream. Dinky’s PDA was hindering her progress, and no one could tell how much. 

So 1st annual review. A room full of people from the special school, the social worker and dinky. 

It was rather nice having Dinky in the room, she was only staying for a little while, she kept saying “mummy” and touching my arm. She was very excited to have me at school! 

Once settled, the principal got everyone to write one thing they admired about Dinky, one thing they thought was working well, and one thing they felt Dinky could work on for the next annual review. 

It was nice to hear everyone say Dinky made them laugh and has a cheeky grin, and helps the other learners sometimes. It was interesting to hear that actually her writing is considered good by the head of key stage (I will come to that later), and although half the room praised her joining in, apparently she needs to attend more of her speech therapy sessions! Her teacher said she needed to push herself, which Dinky completely misunderstood and put her hands on her chest and pushed herself backwards several times, which raised a chuckle across the room. 

We watched a slideshow of dinky in her class. Then Dinky’s views were given, dinky had been given a large piece of paper and with the teacher was asked 

What do you like best about school 

My Dinky, ever trying to give the ‘right answer’ wrote ‘yoo’ as in her teacher.

What is your favourite lesson

She wrote hoes ridia – she wouldn’t talk so her teacher helped her sign horse riding.

What lesson don’t you like 

Dinky drew some lines (pretty sure this was avoidance) the teacher wrote ‘another learner being silly’

Who are your friends

Dinky wrote her friends names, she basically missed off the child who pulls her hair and put the teacher on. 

Is there anything you don’t like about school

Dinky drew a picture of her with a sad face being held by the wrist by an adult 

  
This almost had me in tears. Dinky sat there while everyone took that in, the principle said that from now on Dinkys plan will be amended and wrist restraint will no longer be used. Which is great, although I suspect the next annual review will be a picture of the double elbow.

If they insist on pushing her, they will have to restrain, it is how it works. 

Apparently everyone got to see the review pack the school prepared before the meeting, except me.

Behaviour wise, they are using pda stategies and with the more constantly used indirect language dinky is starting to trust them more, they are seeing a massive reduction in meltdowns. 11 physical interventions in March, 3 in April (although they missed the fact that April was only 2 weeks due to Easter holidays).

Just under 50% of meltdowns were due to demands, over 25% were transitions, about 10% (hard to tell on a pie chart) activity interrupted and the final 15% is other learners behaviour

Not all meltdowns are cause for physical handling, they have realised that I was right, give her space and time and she will calm faster than someone touching her. 

My views. Well, basically I was told there is no point in amending the statement because they (the LEA) won’t do it. Also despite the blatant character assassination of Dinky by her former school quoted in the current report, there is also no point in getting a new ed psych report as school don’t believe that she will engage for the ed psych as she is still not receptive to the school doing assessments. 

The school believe that possibly in 4/5 years, when Dinky reaches secondary age, she may well be able to join a mainstream if they have a special unit attached. I wasn’t expecting that kind of prediction, but I said “over my dead body will Dinky return to mainstream- I already said I didn’t want dinky in a mainstream environment, she has been in two mainstreams within 1.5 academic years, and neither suited her. She couldn’t cope with them and they couldn’t cope with her. The ONLY reason you are seeing ANY progress is because you can give her the environment she needs to learn without always knowing she is learning mainstreams, even ones with units can not hope to provide the environment you can. They will constantly push for her to join the class and Dinky can not be in a class of 30 constantly being given demands- it won’t work.” 

I was told this is a far off future thing to work towards and I said I will not work towards my child going back into an unsuitable environment. I reminded them that I have had dinky at home far longer than any school has managed so far since she reached compulsory school age! That they do not know what that was like when dinky was being excluded for walking around the school on bucket stilts, or being in the wrong place for too long, or needing a break from the classroom, in most mainstreams square pegs are thrown in the naughty bucket and left there. 

They conceded and said that it wasn’t well thought through as yes most mainstreams would love to give children the environment that this school can offer but they can’t. I said they haven’t had Dinky long enough to make any real predictions. 

When it came to speech and language, they contradicted themselves, one minute she is considered within lower normal range, then said she won’t engage so they don’t know for sure. (Reading the report they like the other two speech and language therapists before them, they didn’t do a whole test,just managed one module in one test and one module of another. The one she showed age appropriate skills she also made some errors which show Dinkys difficulties with non literal language and imagination- yet further on in the report she has a great imagination 😒) I do know that dinky isn’t as far behind as she was with speech and that is due to her weekly speech and language sessions.

When the teacher (new teacher) started talking about Dinkys participation being really good I had to hold back my tears of joy! They agree the free flowing early years style teaching suits Dinky and allows her to join in. She writes more often and is starting to make progress academically! I was overwhelmed! It’s amazing, and something I had not heard in mainstream apart from her reading. 

Her reading is above average for her age! I was so utterly proud and overwhelmed in that moment. Dinky has always been interested in reading and I have fostered that from a young age. Dinky has an amimal and lego fascination and I have brought tons of books to help teach her reading and about the animals she loves so much. 

They said Dinky was ‘able’. Yet reading the report she is roughly that of a reception age student still. It’s great that dinky doesn’t have severe learning difficulties like some of her class, but I don’t see that the small progress she has made in a term by participating allows them to believe that:

A. This period of participation will carry on, as is, throughout the next 4/5 years 

B. Dinky will be able to zoom ahead by two years to catch up with her mainstream counterparts. 

I would love to share their optimism, but their belief is contray to evidence of Dinky and PDA in general. I have had to come to terms with many things as a parent of a child with PDA and one of those is that Dinky will never be able to participate at a mainstream level appropriate to her age. To raise my hopes, without knowing the child fully is cruel. What if I was still in denial hoping for a mainstream return? Do they believe they have cured PDA? Or will cure it? No, so why? Why make these statements about a child they have known for a few months? 

I believed the fight would be over once dinky went to a special school that I wouldn’t have to explain her autism or her more specifically her PDA. Again I told by a school they understand the condition but the annual review suggests otherwise. 

This is why awareness days matter, because when a condition is little known, parents and families are given the wrong advive, impression and are let down time and time again. The only way this school are going to learn is to have dinky in their school for the next 4/5 years, watch her lose her writing ability again for the 4th or 5th time, watch her go through stages of participating and being happy to being unable to cope with any demands and being visably anxious. They will have to see that their exploitation of periods of relative calm will come back and bite them in the backside! I did say to the social worker after the review that it is ll well and good for them to say this but this is the time that the other schools started having problems, just wait until they see the second term in full swing. Maybe it won’t be until the third term when she realises that this is not a holiday camp and they start pushing her more like they said the review. 

So there is good news mixed with the not so good. The social worker said that it seems odd that her small progress is being used against her, and the social worker doesn’t feel she will cope in a unit in mainstream, she has the report from the previous social workers and the last school , she knows kids in the units and Dinky doesn’t seem suitable for them. She agreed I had very good reason to not want a return of mainstream and for what it is worth she believes I am right. the point I made I’d that Dinky is 7! Secondary is a long way off. At least they are not trying to get rid of her now.