8 June 2017

Parent Paranoia - A Break Down In Communication


Often parents of children with different needs, disabilities and illnesses find themselves fighting  battles with professionals in different sectors daily.

As a parent you want what’s best for your child and interventions in place that they need to be able to access life as fully as they possibly can.

Often, as a parent you are the ONLY person that fully understands your child’s needs and differences because you know them so well. You know when they are masking or putting on a front, and you know that what they actually look like isn’t necessarily how they are really feeling, but that it is their coping mechanism for when you aren’t around to support their needs as you know fits them well.

Enter parent paranoia! This feeling is real, and consuming and has the ability to knock you left right and centre so that all you can focus on are situations where you’ve tried helping your child and the response from professionals is nonplus.

'Do they care? ‘ - you ask yourself, ‘was i too forceful?’ you constantly overthink.

‘Did i come across like a pushy mother?’ ‘Am i imagining things?’

All these thoughts and lots lots more playing over and over in your mind after certain situations where you’ve advocated strongly for your child.

You know what they need, you know what helps them. So they don’t show it in school, because they are trying their hardest to fit into a society that everyone else is moulded into believing is normal and correct.

My daughter is beautifully behaved at school. Im so proud of that, however it tires me out a little because the extremely violent behaviours that we see at home are unbelievable to those that see my angelic, happy little smiling girl.

Then comes the fall out - The violence, the demand avoidance, destructiveness, picking on her siblings, uncontrollable tics, that she’s suppressed.

My son, is also beautifully behaved at school, he often just gets on with things, does as he’s asked, is a very polite little boy which I’m so proud of - but he’s falling off the radar with his ability to “just get on with it’

'Am i being too pushy?' Am i expecting too much?” thoughts creeping in, situations playing over and over and over in your head, taunting and tormenting. - Parent paranoia. Wasted time spent on thinking about things too much, dissecting them, worrying about what people think of you and how its going to impact on the professional relationship that you thought was sound.

You know that your child needs X,Y,Z, yet because they mask and because they ‘plod along’ means they miss out on those interventions that they desperately need. Which all too often results in their tricky behaviours increasing tenfold at home, regression starts, more paranoia creeps in. Children masking and breaking down at home is all to common and familiar see my Coke Bottle Analogy

'Its a parenting problem' is all too often thrown about like it won’t harm anyone, 'take a parenting course and all will be fine and dandy.’

Its not as simple as that, when there is a communication breakdown, it is the child who suffers the most. falls the hardest, and the parent who tries desperately to pick up the pieces, fighting, and begging, pleading and seemingly harassing people for help.

As a parent of multiple children who have autism and Attention Deficit Hyperactivity Disorder, who both have the ability to mask and ‘plod along’ in situations so they get by, a good communication relationship is THE single most important tool needed to sustain a healthy working relationship for the child. When that communication breaks down, paranoia sets in and eats its way through threatening to destroy everything.

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30 May 2017

If We Want Perfect Children We Should Give Them Melatonin.



A reporter called Sarah Marsh has written an article on Monday based on very little factual evidence and more on mum shaming, and quite clearly unjustified opinions, which are at best, laughable, and at worst utterly tarnishing the community that I find myself in online today. Link to original article here: Too Many Children Being Prescribed Melatonin To help Aid Sleep



Apparently Melatonin is given out too readily to children, who are struggling to sleep, and even though the NHS Data on prescriptions does NOT give figures for children specifically - apparently the increase in prescriptions has been raised tenfold. What even is this number?


The article also states that it has become a fashionable treatment for parents who want ‘Perfect Children’

Trust me if I wanted perfect children I wouldn’t be continually seeking out our prescriptions of melatonin. If I wanted ‘Perfect Children’ they sure as hell wouldn’t need any medication.

As an advocate for the online community of parents who have children with sleep conditions, whether it be related to autism, or not, I find this article highly offending.

I had to fight tooth and nail for help with my daughters sleep issues; I went through years of behavior courses, and sleep courses and sleep diaries. Trying specific night-lights, and weighted blankets, massages with lavender, changing our whole routine so that it was completely tailored to her needs. No disruptions, 100% 1:1 before bed time. Guess what? It never worked, so forgive me if you think I’ve over reacted a little here, but my daughters melatonin prescription wasn’t handed to me on a plate. I didn’t want it because all the other autistic children had it. My daughter simply doesn’t produce melatonin, and needs this to be able to at least get off to sleep and have a few hours.

I know that the article is directed at parents who have children with mainly behavioral problems, but even that isn’t an easy fix. And many of those children are overlooked because of the funding cuts, and the hidden disabilities, the ability to mask their symptoms, so before you go around throwing the term “fashionable to use melatonin” try and include some actual factual based evidence on the number of children who are prescribed this medicine who DO NOT have accompanying disabilities and sleep disorders.

Please think before publishing such articles, We as a community of parents who have children with numerous disabilities, and medical issues, do our best to raise awareness, create understanding and acceptance of our little ones, or even ourselves. And when articles like this are published, they are increasingly misinterpreted, and can undo so much hard work that we do.

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25 May 2017

Forgive Me If I Do A Little Air-Punch When My Daughter's Behaviour Has Challenged You


If you have a child with Autism, and they are experts in masking their anxieties and are able to suppress their difficulties until a time they feel secure enough to release them, then only us as parents, or main caregivers get to truly experience the difficulties and anxieties that our little people are struggling with day in and day out.



Sometimes these kids can go their whole childhood undiagnosed because they have fooled everyone into believing that they are just like everyone else. These children often go on to having a really hard time when they make it into their teens, and by then they have missed out on the early intervention that they desperately needed. Many of these children are only “Caught Out” because they have suppressed to such an extent that other illnesses or disorders arise, such as Tourette’s, or eating disorders, depression and even suicidal thoughts.

So forgive me when I do a little air-punch when Lola’s brought back from her nans, and nanny looks exhausted, or I pick her up from her aunts house and she exclaims “I don’t know how you do it”

When Lola is her natural self, uninhibited, wildly carefree, and over excited or she’s anxious and hyperactive, controlling and difficult to manage it can leave you feeling utterly exhausted. These are Lola’s natural behaviours, these behaviours are her normal, her typical and when someone describes her as being ‘good as gold’ I inwardly groan.

When she is ‘good as gold’ she is NOT herself. That is not natural, this is Lola masking, copying, and mimicking others so that she can make it through. 

She’s like a beautiful little swan gliding gracefully through the beautiful sparkling waters, but underneath she’s using all her energy, all her grit and determination to paddle those little feet so that she fools you into thinking she’s mastered this skill to perfection.

By masking, Lola is suppressing and squashing down her troubles and that leaves only one result. An explosion. Double and triple the amount of her natural behaviors explode all at once - when she’s home, or when I pick her pick – resulting in the most violent and emotional meltdowns that we see. An example of this explosion is described in great detail in my Coke Bottle Analogy

So forgive me when I ask you how she’s been - and I can see the exhaustion in your face – but I look relived that she’s been challenging. I sometimes even let slip a whispered “phew” or outright say “thank god”

It isn’t because I condone bad behavior from children, or I think it is funny. It’s because I am so pleased that she has been able to be herself, she hasn’t suppressed those anxieties to release at a time that she feels safe, and it hasn’t resulted in our family feeling the full brunt of an almighty, violent and very emotional meltdown for hours and hours on end right after we have just had a tiny amount of respite that we have been waiting months for.

It is because I am thankful that she also sees you as her ‘safe place’ and that she trusts you enough to be able to mange her anxieties. She trusts that you will help and guide her and you have been given the privilege of knowing who she really and truly is.

So forgive me for doing that little air-punch because it also means that you are one extra person able to give me a break! 

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18 May 2017

Is Gatwick Airport REALLY Autism Friendly?


 
After using the special assistance at Gatwick Airport over a year ago, and being quite impressed with the service, even though there was some miscommunication, I booked it again for this year - hoping that those miscommunications and slight problems would be improved after I had learned from the previous experience.

We are family of five, and come with a hefty bag of disabilities. My partner has a mobility condition, and really struggles with long distances, so the wheelchair assistance is a god send for us. I also have a little girl who is Autistic. She has severe anxiety, Attention deficit hyperactivity disorder, Sensory Processing Disorder a Motor Disorder and a whole host of other disabilities. She needs full time 1:1 care, and is currently in an amazing specialist school.

Due to this we decided to take the risk and take the children out of education for 10 days to avoid the hustle and bustle of the airport at half term.  Knowing how much she struggles with busy places, and unfamiliar surroundings I booked the travel assistance for my partner and Lola, so that as a whole family we could go through with ease, using their special dedicated lanes, the lanyard system - which is in essence a necklace that you wear so that staff members are automatically aware of the need of extra understanding, care and empathy – and have the use of the travel buggy that would take us from duty free to our departure gate.

I breathed a sigh of relief knowing that I had booked the appropriate seats for my family, arranged all the travel assistance so that my daughter could be whisked through the crowds and my partner would be in less pain due to all the walking. I didn’t make the same mistake as the year before where they left me with two children and only took Lola and Kenny, so that we were all split up and rushing to make the plane. 

Or so I thought....





I had planned, I had checked, and double-checked. Thomson telephone enquiries have a 3GB notes storage of all my conversations making sure everything went to plan. (Yes I am THAT parent) As a special needs parent, and the partner of a mobility restricted person the planning of a holiday needs to be planned like a military operation. I had prepared my children for the airport, I had explained what would happen, how we would be transported through, I had explained that this time we wouldn’t be split up, because as I am Lola’s carer I would need to travel with her.


We were all so excited. They knew what to expect and I was confident on my preparation for a girl with such high anxiety that everything should have run smoothly.


So why didn’t it? Why were we left sat around waiting for assistance in the busiest part of the airport where my daughter was reduced to such high anxiety that she was openly self-harming. Screaming at anyone that walked past, kicking and punching walls and floors. Why was I wearing a lanyard that was supposed to alert people of my position, yet no one came to help?




My partner was wheelchair bound and had to look after two other children whilst my baby girl tortured herself, with bites, and slaps, and punches. She was Spitting and dribbling, screaming and crying. Why were we not given the Special assistance that we were promised? Why were we not given the special assistance that we needed, and that we quite rightly should have been given.


We were left vulnerable, in the middle of a very busy airport, ignored and isolated.


 


When we were finally took through the queues that we should have bypassed, Lola’s’ anxiety increased with such intensity that she had to be forced through the metal detectors. This resulted in her knocking the alarm so she had to then be patted down and put through the big intimidating scanners that she was absolutely petrified of. At this point she was so exhausted that she froze, and because the assistance was so poor I did not know where my other children were. Kenny was wheeled through the scanners, and because Lola had to go the other way, Stanley (9) and Connie –Mail (4) were left to navigate their own way through.

The one saving grace at this point as I burst into a flood of tears, in front of my children and three hundred other passengers was the security lady who was searching us. She saw my tears, and frustrations, she noticed my lanyard and she calmed me down with her kind words and patience. She spoke to me for so long, not caring that others were queuing, she put me first.

She told me how much of an amazing job I was doing and gave me instructions as to what to do when I got through. I wanted to hug her and never let her go to be honest, these people - The ones that shine, the ones that show so much compassion and empathy are like gold dust – and I hope she reads this and I want her to know that I wont ever forget her. She will always be etched in my memory as ‘The one who got it’ Thank you Gatwick for employing such an amazing and selfless person, but shame on you for not recognizing a family in desperate need of help and assistance. Shame on you for ignoring my requests, shame on you for advertising such services and being so poorly organized that it would have been easier to go through without the assistance.

After such lovely words spoken to me by security I was confident that the worst was over. I was sure it would all run smoothly from then on.





It wasn’t over and it didn’t run smoothly from then on either. It was a complete disaster. After booking my whole family through for the assistance, I was assured we would all be taken through. However upon arriving back to the special assistance checking point with our buzzer I was informed I would have to walk with Connie and Stanley regardless of the fact I was Lola’s carer and that it wasn’t appropriate to allow her to travel essentially on her own.

Why would they even suggest this? If I wasn’t flying with Kenny, would they have made her go alone? I don’t think so. So why again, did I have to find out last minute that the whole family wasn’t permitted on the buggy? My daughter was prepared weeks in advance for what was going to happen, what to expect and what it looked like in pictures.

The sheer bad attitude of the staff behind the disability assistance desk was absolutely shocking to say the least.



An excerpt from the Gatwick airport Assistance page says :

 

                                              Hidden disabilities
We are working with a number of charities to identify how we can improve the airport experience for our vulnerable passengers who may not want to share details of their hidden disabilities

If this applies to you or someone you're traveling with, we can offer you a special lanyard to wear on your journey through our airport. This will identify you to staff as someone who may need additional support or understanding. Our staff have been specially trained to recognise the lanyards and act accordingly. 




I can assure you that they did not act accordingly, and they did NOT recognise the lanyards or the fact we were a vulnerable family. They did not care, and their attitude towards our situation after it was explained in detail was not understood and it certainly wasn’t acted upon.

I am calling out now to Gatwick Airport to read this. And make changes. This service has really made me think about never wanting to through an airport ever again with my children. How is that inclusive? How is that Special Assistance? I am very disappointed and even if I did consider flying again, I am not sure I could manage to persuade my daughter to ever go through an airport again. I want to be able to see this face, This happy, beautiful and excited little smile on a holiday with her family again.



So not only has this experience ruined our expectations, disappointed us and caused an extreme amount of stress for my daughter. It has also ruined future experiences, further family holidays for all of my children, Future life experiences that everyone should be entitled to all because you got it wrong! On so many levels did you get it wrong.

If you have any idea how I can ever get her on a plane again please do feel free to let me know? I simply cannot plan for the unexpected. Why did this happen? Had i expected too much? I didn't think so.
Have you used the Special Assistance at Gatwick Airport ? How were you treated? Did the staff understand your needs and deliver the assistance that was promised? Or were you left feeling frustrated and tearful and isolated like my family and I? 


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Living With Very Challenging Behaviour



Three years ago my daughter was undiagnosed.


Pre-school had no concerns and neither did her teachers in year 1. We were in limbo discharged from all child services after a half hour assessment where the paediatrician deemed my child "an extreme version of normal" what the, who, why, Bleurgh. It was incomprehensible that this professional "knowing" my concerns and family history, could describe my child in this way. What she really wanted to say was, " don't be silly, autistic? Her eye contact is good, she's just naughty and defiant, here take this referral for the Triple P parenting course" And so it began..... The rigamarole that parents like you and I are all too often finding themselves slavery to. Fighting. Paperwork. Hoop jumping.




My daughter first hit me when she was 1 year old. I was buckling her into her car seat which was always problematic and as I bent over her I looked into her eyes and said something, what it was I can't remember, but in that second she slapped me so hard around the face that my head jolted backwards. She was strong. I remember saying to my mum in that moment that i would bet my life on it she was autistic. (Not because of the violence, we already had a couple of other people in the family diagnosed) it was just an instinct that struck me in that moment.

Her behaviour seemed to spiral out of control. When she started  walking she would just approach her siblings of other members of the family  and lash out for no apparent reason. We couldn't work out why she was hurting people. No one would listen to our concerns!

My daughter IS autistic, she DOES have sensory processing disorder AND Attention Deficit Hyperactivity Disorder.

She also displays very challenging behavior. She is diagnosed as atypical autism, although I think she fits more at the PDA (pathological demand avoidance) part of the spectrum. PDA, is where the child or adult feels such intense anxiety that every demand is a challenge for them, so they avoid said demand to such an extreme that even every day "normal" demands are problematic. From the time that she wakes up, until the moment she goes to bed we have to face violent outbursts, endure endless hours of screaming at the top of her lungs, she is impulsive and has no control over her emotions or outbursts. At her very worst we endure being spat at, hit and called all kinds of names. She's very hurtful at times and it's extremely hard not to take it to heart. On a good day I can ignore and rise above the endless screaming and abusive comments and violence. On a bad day, it's excruciating. I feel a pain in my heart so powerful I just want to cry. How can this little 7 year old be so hateful and unfeeling. Doesn't she love me? My heart literally gets ripped into a thousand pieces and yet, Id forget it in an instant. I tell her I love her and I hold her until she's calm and quiet. Until her little bones have stopped trembling and then I forgive her! You see she doesn't mean to do all of these things, she doesn't mean to hurt me or anyone else physically or emotionally. She simply cannot control it. We have to parent her very differently to how other people parent and it goes against all traditional parenting styles. But if we didn't use the limited demand and only consequence the completely unacceptable things, then our lives would be turmoil. We do not Accept violence, or spitting. Those two things are the only things we consequence for Lola in this house. And if you're reading this and you have a negative view on my parenting strategies that's ok, it's normal, I once thought like you, I didn't understand it either, it's very very difficult to apprehend. BUT if you had a child like mine, and nothing else in the world worked, what else do you have left to try?

Her challenging behavior has a negative effect on all of the family, her younger sister copies some of her mannerisms, and for her elder brother, its particularly unfair because he’s so young he cannot comprehend why I have to deal with her In a more lenient way. It upsets him and to be honest I don’t blame him, I would feel exactly the same if I was in his position. He’s learning, and beginning to understand why we do things differently with her, but sometimes its hard because he has his own issues that he has to contend with. He is a big brother, and a carer and a son, and a friend but most importantly he is “him” and he struggles immensely with her challenging behavior and always having to give in, or give up, or be quiet, or let her have it. He’s a good boy and I’m so proud of him for the little young man he’s grown into.

As a family we do the best we can to support each other throughout the particularly bad times. We encourage and praise the good behavior even the slightest things, we value and respect each other. And we love each other unconditionally. We will get through the hard times and we will help each other succeed because if we don’t then we will just crumble as a family and that isn’t an option.

My advice to any one out there struggling with a child who has very challenging behavior is to just take each day as it comes. Every day is a new day, you do not need to punish yourself for the things you did wrong, or could have gone better, you need to congratulate yourself for getting through it in the first place, and then spend some time reflecting on how you might do it differently next time. Negative thinking only has a negative impact on how you tolerate things in the future. Take a step back and look at what’s really important for the family. Make some time for that other child where there won’t be any interruptions. Make a list of what bad behavior you need to tackle first, and stick with it. Be strong and let the little things go. You do not need to spend all of your waking hours picking up every bad habit, or behavior it will only make you stressed and unhappy. Ask yourself DOES IT REALLY MATTER. if it doesn’t let it go as princess Elsa would say.
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30 April 2017

Chapter 12 - Lack Of Evidence Meant She Wasn't 'Severe' Enough


The Local Authority had decided that Lola didn't need an assessment and the letter would explain more.





When the letter arrived it stated that:

Lola's special educational needs are not severe enough to be able to grant her an assessment. And due to LACK of evidence provided by the school they wouldn't be assessing but recommending that the school make an appointment with the Educational Psychologist

So this LACK of evidence that the school had submitted as part of her evidence consisted of 15 lines of illegible scribble. That is not an exaggeration. I was so mad that I cried. All that hard work had been for nothing. Absolutely nothing. The school knew I was applying, I had kept them in the loop, and they promised to start logging evidence, yet they submitted 15 lines of writing, and all her previous medical reports which i had already submitted as part of my evidence.
 




Well luckily, me being me, had already written up my appeal, and It was bigger than the last lot of evidence. I re submitted everything I could find and made a contents page, and referenced everything I could possibly reference in the reports against each other to prove why she did need an assessment and that her needs were severe enough.



I proved that Lola was socially, emotionally and mentally behind by at least a couple of years to her peers. I proved that in the short time she had been at preschool, and year R and all those many months she spent at a private nursery has had no effect on her learning at all. I made representation that she was in danger of or in early stages of regressing. I sent my appeal to the courts. It was actually quite terrifying knowing that I was putting myself up there in the courts to actually have to speak on her behalf and fight them to assess her needs myself with no support from anyone.

Inside I was scared.


It was very rare for me to admit that i was struggling, I pushed on, i tried my hardest to rise above the feelings of hatred from professionals that my daughter was in the care of. If i admitted how i felt, then i was failing wasn’t i? On the rare occasion I had opened up and spoken about my feelings to someone they gave me the best advice that i have ever received, advice that to this day i still take on board, and its the one thing i love to share with others when they ask my advice. I was told that once I walk in that room, I should shed myself of all emotion and forget about being this little girls mum, I need to become her lawyer, Her advocate, her voice. Speak for her, stand up for her and tell them what she is unable to tell them.

Ever since then that is exactly what I have done! I'm hard faced and cold and to the point. And this is certainly not because I hold no emotion for Lola. In fact It's the complete opposite, I have too much, If I was to go in those meetings full of emotion and sadness for my little girl, then I would quite possibly be a blubbering wreck, which would in turn leave me vulnerable to the opinion of being unstable and I'd have the task of trying to defend my emotions as not being out of control/ depressed/ neurotic.


They would not take me seriously.

                                            
                               This was just the beginning.

                                                                What else would I have to fight for?
 


Why do I need to fight for what's right? Why can't they see what I see? Is it because of money? Probably. But I didn't care about that.  I will fight for the rest of my life for that little girl and the rest of my family, because we deserve to have a decent quality of life, together making those memories, laughing as a family, sharing jokes and cuddles and being proud of each other. And we/they will have one

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25 April 2017

Chapter 11 - Introducing PDA On Diagnosis Day

 
 A Journey Into The Unknown



Okay so I know I say this every single chapter and it's probably getting a bit repetitive now - but it's true - things got worse. We well and truly hit rock bottom going into 2014. Lola's behaviour was erratic, it's like she didn't care about anyone. She didn't care about other peoples feelings, there was no reasoning with her, she was lashing out, her anxiety was extreme, and we were at our wits end with her.







I didn't know what to do.

We had the occupational health therapist strategies in place, I mean I went berserk, I brought weighted blankets, weighted rucksacks, bean bags with zips and poppers and sensory dens, sensory swings. (Swing pods) all the lights you can imagine, bubble lamp, lava lamps salt rock lamps, she wasn't sleeping, she wasn't resting in the day. And by pick up time from school she was a complete and utter mess, nearly every day she was having accidents and she had no friends.

She loved people, and specifically spoke about a couple of children all the time but it just wasn't reciprocated in the same way. Lola loved adults too, and found companionship in a TA, whom she loved. The school described it as her special interest. (Not to me of course) but to the clinical professionals.


So breaking point was this:

Just a normal pick up for us, me carrying Lola out of school kicking and screaming, pushing a baby, whilst watching Stanley, strapping her in the car only for her to kick and scream and bite herself the whole way home. By this time we had moved Stanley to the front seat so that Lola couldn't hurt him as she frequently did once in the car. It was a horrendous evening, Kenny was working late, it was the beginning of the year 2014 and as a builder things were slow over Christmas so he worked a lot of evenings at that time. I was bathing Lola and Connie, Connie was 15 months and just sitting in the bath playing with her toys and toothbrush and I was sitting on the toilet. Lola pushed Connie’s head under the water, must have been a few seconds. I must have zoned out, I really don't know, or I was looking the other way, I can't quite remember but I didn't have 100% focus on them. And I blamed myself a lot after this. I was so angry. With Lola and with myself mostly. Why wasn't I watching them? I was sat right there.

I grabbed Lola's hand off of Connie’s head and grabbed her out of the bath, whacking her on the back as she was coughing and spluttering. But she was okay. She was fine. She didn't cry just coughed up and cuddled me. I was distraught I got Lola out the bath and Sent her to her bedroom, she had a look of confusion, hurt, upset in her eyes. She didn't realise why mummy was shouting, she didn't realise why Connie was coughing and spluttering, she didn't realise what she had done.

Here's why. She has no understanding of consequences. No idea of what her actions may cause. She just doesn't. That doesn't stop me getting cross though. I couldn't even look at her and even in that moment I knew it wasn't her fault and the little look on her face whilst I put her in her room was devastating. But once again Connie needed me and I couldn't concentrate on Lola I needed to concentrate on Connie



                            (At Peppa Pig World - Phoning the Local Authority)

That night I've never been so grateful for an unannounced visitor.  My sister walking in and taking control because to be honest I couldn't even think. I wanted to just run away, hide and stay there for a long long time. Becky went and dealt with Lola and I phoned 111 because I had freaked myself out with something called delayed drowning. Once I had calmed myself down enough to look at Lola I went to her room and she just melted in my arms. There wasn't any need for words right then I knew I had to protect Lola even from herself because if I wasn't there to teach her that these things are wrong then what will she do next? She needed me to be calm, and stop shouting and understand her because to teach her life skills I have to understand her inside and out.

An ambulance was called and Connie Mai was checked over and was fine. And back to the doctors I went the next day to demand that someone help us. We saw a different GP this time and this one I ask for every time to see Lola. He wrote a letter to CAMHS and within two weeks I received a letter for an appointment for an ADOS (autism diagnostic observation schedule) for ten days time.

I was so grateful

 
In other news –

Kenny has his lumbar puncture, he was scared, but I told him if Connie could have one without crying then he could manage it so we went together just like all his other appointments, he must feel like he has a second mother with me about. I make sure I go to every appointment, know everything there is to know and I'm quite overbearing actually when you look at it like that but at least we all know what's going on as if it was left to him we wouldn't know anything.

So this lumbar puncture was the next test in line to confirm primary progressive multiple sclerosis. The procedure was done on a day ward and it was over and done with within a couple hours. It wasn't as bad as he was expecting and he felt fine after. I made him go home and lay down for two days though.

The results were all clear.

We were ecstatic. But that didn't solve any of his problems, his legs were getting worse. He was unbalanced, unco-ordinated and in a lot of pain daily. He describes it as - imagine you were to kneel on your legs for half an hour and they were to go all tingly and numb, that's how his legs feel constantly. Every second of every single day. I know I couldn't bare it. I have no idea how he manages to get through each and every day feeling like this.

So I went into school and told them Lola's appointment was imminent and that could they start the statement process, to which they agreed, they said they would start collecting evidence. Which they never did. They told me that Lola needed a diagnosis before they could apply for an assessment of her needs. I knew this to be false and so pulled them up on it. They agreed to apply again, Which they never did.





So I applied myself, with bucketful’s of evidence as to why she needed extra funding. I researched all the correct terminologies, and laws, SEN code of practice quotes, got together all her reports from the consultants and pediatricians and hunted out all her school reports. It took an age and I worked on it for weeks. Her ADOS appointment came around very quickly - it was end of March sometime. I was so very nervous that she was going to be having a good day, because this happened quite frequently with Lola, she would just switch, and be a completely different person to the point where I think I imagine things but luckily she was just her normal beautiful self. She was Lola, and she behaved in a way that she would normally behave in. She was difficult, hard to read, uncontrollable, and had the need to control others. She was silent for most of the appointment. They done a series of games and used prompts, the whole thing took about an hour and Lola showed enjoyment in one thing - which was the bubbles. She smiled and laughed and shared her enjoyment. And as soon as they went away she growled and clammed up.

The speech and language therapist who conducted the ADOS said she suspected a diagnosis would be given of autism but that she needed a clinical psychologist to go and view Lola at school and have an interview with the teacher.

(I now have access to that interview) and let me tell you this - For someone who was supposed to be fine at school, according to the teachers own admissions she certainly wasn't if this questionnaire is anything to go by.

I had feedback from the clinical psychologist, who mentioned a few things but never really said anything. Wasn't worth the phone call if I'm honest. We just had to wait two weeks for the appointment for diagnosis if any. I convinced myself I would have to keep fighting, I was sure they were going to turn us away again and that it was a waste of time, and that I’d have more hard work and more appointments to fight for.

Turns out I needn't have worried.

Lola scored high on the ADOS and on the social communication questionnaires. She was diagnosed as ATYPICAL AUTISM.

For those of you wondering why, it's because she displays quite different from a child with classic autism. She is social, sometimes too social. And she manages to hold all her anxiety in at school so they don't see the struggle. She masks all her symptoms, because she is a girl and naturally girls need to be social don't they? They have it built in them to get along in life and Lola has adopted these coping mechanisms to survive. But as soon as mummy picks her up she can be herself and the bottle top comes off and she explodes all over me. Just before this though and this is where I am going to bring your attention to a little something called PDA (Pathological demand avoidance!) Something I came across when googling the term "autism in girls" and "why is it hard to detect autism in girls" (see I was Google maniac and I googled a lot at this point) I read everything. And when googling this it took me to a page on the national autistic society.





With a clear description of a condition called PDA, which was at this point described as "a condition increasingly known as an autism spectrum disorder" (that's changed now) but last year no one would even acknowledge it, it's like all professionals had been brainwashed to ignore this term, they brushed it off, professed to not know what I was talking about. But when I read the page on PDA, it was quite literally like reading a chapter of her life, it described her to a tee! And so I found a support group and researched some more. It was Lola.

She was PDA.

How could she be so like this and it not be recognized? It was postcode lottery. Some children and adults like Julia Duant have a diagnosis of PDA, or of autism with added demand avoidance.

It was so important she got an autism diagnosis that I didn't push it with her consultant and Instead I adopted the styles and techniques and learning strategies that were having consistent positive effects for children with PDA and used these at home. With much more benefit.

It was a struggle at first to convince Kenny. You'll see why when Julia from Me, Myself and PDA explains about PDA. And it's symptoms and it's very diverse strategies. But I made Kenny and my mum fill out a PDA questionnaire and Lola scored just as highly as when I scored her. I was so excited I found something that fit her. For once I agreed with the professionals she didn't quite fit the classic autism diagnosis. And going back to the PDA support group they inform me that basically atypical was PDA. We had more referrals from that diagnosing appointment too, Lola was to see a gastro doctor as she always has bad belly and was frequently sick. Without having a bug. She suggested a reduced dairy diet, so no big cups of milk but milk on cereals was ok, and limit the cheese and yogurts etc. it helped but it didn't cure it. So by the next appointment Lola was on a completely dairy free diet and things were much better. Coeliacs disease was mentioned and she had bloods taken for genetics and coeliacs disease.

At the same time Stanley had his appointment for the neurofibromatosis and he had bloods taken for vitamin d deficiency and other things too. Stanley saw the neurology consultant who didn't diagnose NF1, because to have it you need at least 6 of the café-au-lait marks and he had 4. So he was to have an eye test to check the health of his eyes and come back in one year. We have had his second follow up eye test though, where they had flagged up dyslexia and have been referred to the dyslexia research center for testing. He has six months worth of research sessions and then we get a full report and special glasses if needed. Stanley was reporting that he sees some letters and numbers as colours.

So we had a diagnosis, we had a dairy free diet -which was showing improvements. And I had sent off my request for an assessment of Lola's special educational needs, for a statement. And requested that the school get the EP (educational psychologist) in for a visit to assess her needs.

They were adamant they weren't going to request this and kept putting me off stating they hadn't collected enough evidence and that the EP was very busy and that they thought Lola was okay. I felt so alone and that no one was supporting me, it was awful. I felt paranoid that they were talking behind my back and I sat there and I spent about two months collecting evidence, arranging more appointments for Lola with the SALT, (speech and language) and OT (occupational therapist) for a full assessment of her needs as evidence towards an assessment. These reports showed that Lola needed a significant amount of extra support. The request was due to go to a panel of decision makers on 30th July 2014 This was Lola's birthday and we were at Peppa pig world. I was so anxious all day, I knew in my heart it would be bad news but I was still hoping. I phoned them and they said they had no news for me but would contact me ASAP with a decision.

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21 April 2017

Autism Awareness - #YourJourneyMyBlog - How a Non - Verbal Child says "I Love You"

The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, They plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.


So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you. Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for













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You can follow Nikki on her Facebook page 

My Autism & Duanes Syndrome awareness


She also has a website which is HERE



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