9 October 2017

Marvellous Monday - An Interview With Kate* & Little Miss E - PDA



Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to  publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'
 
Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how challenging and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates. 



What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?


So can you tell me a little about yourself and you family and the connection that you have to Autism?

We have one amazing daughter who is 6yrs old. We took her for a private assessment early this year and she was diagnosed as we believed she would be, with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile.

She shows many classic 'Aspie' Girl traits and also a very high level of demand avoidance as you'd expect with PDA.

We are lucky to have a very supportive family. I have family members who are Autistic but we didn't know anything about PDA until researching Autistic traits combined with a passion for role-play, and PDA showed up.
 

Its so different isn't it? I had the "Light-bulb Moment" commonly described by parents of children who fit the PDA profile.

So,  tell me a little about how you manage this positively?


Our daughter has helped us look at everything through a different lens. We live differently totally on purpose and take things very slowly to make life as inclusive for her as possible.

Dealing with demand avoidance daily benefits from extreme flexibility, acceptance, and patience from everyone. When Miss E gets overwhelmed she needs time to rest and reset - a lot of time sometimes! We follow her lead as she is an only child which is a very different dynamic to managing with siblings and their needs.

We know she is always doing her best and if things are challenging for her at times we just hope we can help her stay full of confidence in who she is which is awesome, funny, self assured, tuned in to her needs, focused, interested, full of beautiful smiles and cuddles, and so much more!


It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. You sound like you really have it worked out, like you say though, its a very different dynamic when you have multiple children and one is trying to cope with having such extreme demand avoidance. But equally its still very very challenging. 

We are really mindful of her triggers including sensory stimulus, demand avoidance plus social & communication challenges and support her the best we can in making her environment and life circumstances the best we know how.

I believe the best thing I can do often is take care of me and deal with the things that trigger me so I can can hold a calm space for Miss E when she needs it.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

We don't really have a morning routine as we home educate and always have chosen that. Our beautiful girl wakes around the same time each day but according to her natural rhythms. She isn't often very hungry and usually wants to play a while before she's ready to eat.  I'm always starving, so I prepare something the night before ready for me to grab when I get up. She chooses her own clothes and gets dressed when she wakes up out of choice. We brush her teeth anytime during the morning and sometimes in the afternoon when she feels able. We have very few demands.
 
That just sounds absolutely perfect for a child diagnosed with PDA, I really think Lola would benefit from much the same. She is so much more relaxed at the weekend when she wakes up.
So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Little Miss E and as shes one of our anonymous interviewees - Here is her mascot!




Little Miss E is clearly really benefiting from your awesome parenting techniques, tell us those bits about E that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?


I love seeing how much her self awareness grows each year.  

What do you find most Joyful about E?

  • Hearing her sing and seeing her dance makes me grin from ear to ear every time. 
  • She puts her arm around my shoulders and cuddles me.  
  • she chats away with such ease and confidence to people in shops and other venues.

What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.


Its really important for carers of autistic children to take some time to re charge batteries, and look after themselves, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

I'm a holistic practitioner so I use relaxation tools like EFT, Reiki, and meditation for myself everyday & I love a good soak in a bath with Epsom Salts!

I get so much from connecting with other parents walking a similar path through the amazing Facebook groups run with so much love out there. We feel so lucky to be raising our daughter at a time where there is so much information and support for parents on PDA and such an astounding PDA online community building all the time.


Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does E have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Because Miss E is at home she chooses what she wants to do when. She has a favourite sofa and a blanket she loves to get cosy in for a rest.
She loves using the iPad when she wants to just chill out. If we are out and about she will use ear defenders and her buggy to escape the sensory overwhelm.


I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.


Finally we all want to know about the biggest milestone that you or E has accomplished in recent months.

We just love see her growing in self awareness all the time!


And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.


Thank you to Kate* for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.


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2 October 2017

Marvellous Monday - An Interview With Lynne


Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to  publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'



Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series. Hopefully we can help everyone start the week with some positivity and an uplift. We all know how awful and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates.

What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?


So can you tell me a little about yourself and you family and the connection that you have to Autism?

My husband and I have 4 children. Dylan (18), Sarah (6), Marcus (4) and Lawrence (2). Marcus was diagnosed with autism 3 days after his second birthday while I was pregnant with his younger brother. My husband and I recently did a role swap. I got a relatively stressless clerical job and he gave up his very stressful, management job in Telecommunications. Our teenager (who still lives at home) is a full time student.

Wow – It sounds like you have your hands full, I imagine it can be pretty difficult at times, Can you tell us a little more about how you manage things at home positively?

I suppose we do things to suit Marcus. We found ourselves saying “No, no, no” so we removed everything that was negative. For example, He is an exceptional climber. So we got rid of the dinner table and chairs. We put our sofa against the wall and placed a very strong side table at the side. This created a safe climbing area and we encouraged it. We made our living room a YES room. This made our day-to-day living more durable - Especially during the toddler stage.

We are definitely pro-active parents and are constantly thinking ahead. We are constantly risk assessing and tend to stick to places/times we know to make any venture out the house enjoyable for parent and child.

Sticking to our strict routine is key to a peaceful day. We have tweaked our routine to suit the whole family. Each change to routine now has a natural flow to it. They are subtle and don't have a huge impact now. Our son is non-verbal but he has signs, gestures and squeals that tip us off when he is starting to struggle.

We have found our own stresses come from fighting against him. Trying to get him to do something he clearly doesn’t want to do. It's good for his development to have his boundaries pushed a little in order for him to progress. This is only manageable if both parent and child are calm. We evaluate things afterwards to see what went wrong and discuss ways to push further if it went right. Every negative can be turned into a positive learning curve.

My husband and I both agree it's gutting when we can't all go to an event (family wedding, school function), but one of us has to wander around with Marcus or simply stay at home with him. But once you accept those limitations life gets easier.

It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. Your YES parenting seems simple yet so effective. Its great that you and the whole family are working on the same page that really helps.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

Routine, routine, routine! Our lot can wake up any time between 5.30am and 6.30am
7am Coco pops for cereal. Only cbeebies on TV. (we arrange the routine in line with programs)
7.30am Kids get dressed at the same time every day. But no socks or shoes until it's time to leave. He will just take them off!
8.00am Toast (usually stolen from parents)
8.30am Coat, socks, shoes and restraint straps on.
We have a visual time table which helps too.

I also have a very strict routine, they fight against it continually but it definitely benefits them, as if they deviate from the routine it all ends up in chaos.  

Thank you so much for sharing. So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Lynne and her beautiful family. Isnt Marcus gorgeous. 



Marcus is clearly really benefitting from your awesome parenting techniques, tell us those bits about Marcus that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?

Marcus has recently starting ‘giving Five’! He never clapped his hands until last year so these are huge milestones for us.
The biggest achievement he has done is POTTY TRAINING! After going to the bathroom with dad for weeks and being fascinated by the ‘flowing water’ and then the excitement of the toilet flushing. He decided that that’s where it goes. The nappy was off! It was truly amazing at the age of 4. He will wait until a nappy is on to do a number 2 and wears a nappy in bed and on car journeys.


What do you find most Joyful about Marcus?

1 - Marcus notices tiny details; he can be stimming back and forth and all of a sudden STOP! Fixated on something. - A knot in the wood on the fence, a gap in the curtain, a cobweb on the ceiling. I find this fascinating.

2 – His additional needs support worker told me, that he is more intelligent than his peers in Nursery. He knew numbers 1-10 at age 2 and now at 4 he knows his alphabet backwards. He figured out the passcode on his tablet by himself.

3 - He loves our cat. The cat can be quite grumpy but with Marcus he remains so placid. Their relationship is lovely to see, both communicating without words. Marcus can get the cat to follow him like playing a game of chase. When Marcus is ill, he lies on the cat like a pillow using his soft fur for comfort (must be a sensory thing).

That’s amazing, animals have a true sense of loyalty to our little people. Our cat is the same apart from with my boy, absolutely idolises him.

Its really important for carers of autistic children to take some time to re charge batteries, and look after their self, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

Before I returned to work I would definitely find my self, sitting at the bottom of the stairs with a cuppa in one hand and a mobile device (facebook) in the other. This was my alone time. I could see the kids in the living room playing separated by the high stair gate. My cuppa was drunk while it was still hot, my phone was not swiped in order to watch trains on you tube. It’s Bliss!

Thank the stars for our wonderful teenager. He doesn’t mind sitting with his siblings or taking them out into the garden just so I can have a shower, wash the dishes or just have 5 minutes in silence. On an evening, once the little ones are tucked up, he babysits. My husband and I drive to the local McDonalds, get a drive-thru coffee and sit in an empty car park. We chat, laugh, cry and discuss the issues from the day. We are so lucky to have our teenager for this.

Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does Marcus have any successful techniques or aids that he uses that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Food – as soon as he comes into the house after being out, Marcus heads straight for the biscuit tin. He uses his juice cup as a comfort too. He clamps the spout between his teeth and runs around with it – hands free.

When he is struggling he vocalises mmmmm sounds. Our speech therapist said as he is very movement orientated this movement of muscles helps him. And also Stimming, running back and forth, the more he moves the better he copes.
When we are out and about he does really well as long you keep walking, he can’t stand still or wait.

Finally we all want to know about the biggest milestone that you or Marcus has accomplished in recent months?

Honestly, his biggest milestone is settling into Nursery and passing his targets set in his Individual Learning Plan (IEP). This was our biggest fear as parents with an autistic child. His first year we argued his case with our Local Authority and was given his own Additional Needs Worker for 8 hours. So he only went to nursery for 8 hours each week. His IEPs track his progression and OMG what a hug impact those 8 hours have made, he had hit every target set for him.

This year we have just won a huge battle and not only for our son but 2 other special needs children that will benefit. Marcus was the only one of 4 children that got the right support last year. Now all of the special needs children will be in a secondary nursery room with a ratio of 4 adults to 20 children. With one adult being an Additional Needs Worker dedicated to the Special Needs children. This means that when therapists come in they will have an extra adult to help with hand over hand activities and help support their progression.

I cannot wait to see what achievements my darling little boy will make this academic year.

Wow what an amazing achievement you should be very proud of yourself indeed. And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.

Thank you to Lynne for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.

  
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25 September 2017

Marvellous Monday Interview with Riko.


Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'
 
Please extend a big warm welcome to my first interviewee Riko, from Riko's PDA Page...........
 
 
Good Morning Riko and thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how awful and exhausting the mornings can be, especially if the children or you, are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates, so.......

........ What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible.

So can you tell me a little about yourself and your family and the connection that you have to Autism?

I'm a single parent to 3 boys (10, 4 and nearly 2). We are all Autistic, the type we have is called Pathological Demand Avoidance. So I'm a PDAer bringing up PDA boys. It makes for interesting experiences.

Wow – It sounds like you have your hands full, I imagine it can be pretty difficult at times especially with you all having demand avoidance,  but tell me a little about how you manage this positively?

I try to keep a positive attitude, I remind myself that the kids and myself are doing the best we can with what we have. The words 'kids do well when they can' and 'can't help won't' help me a lot because it reminds me that we are trying our best, it's our disabilities that hinder us. I watch a lot of comedies and use humour as much as possible to ensure everyone has a positive attitude. It's not easy and there are times I really struggle to think positive about myself and the boys, I try to remember that no one is perfect and even when we make mistakes it's not the end of the world, it's a chance to learn and change.

It’s definitely exhausting having to remember all of the stratergies needed to help an autistic child, but an extra two and being autistic yourself must make it quite challenging to use positive communication to keep anxiety and those shutdowns at bay. Sounds like you’re doing a Marvellous job (See what I did there?)

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

1 - Reduce, delegate and be positive. If I am struggling then I see if there's anything I can remove from the routine. I keep our routine loose and make changes as needed. If we're in a rush I will skip some parts, as long as they aren't essential. I also try to prepare as much as possible the day before, so bags are ready and clothes are chosen. Our basic routine is get up, get dressed, get out the door. Everything else is optional.

2 - Where I can I delegate. If I can't get one of the boys ready I might ask one of the other kids to help, but I'm always prepared for avoidance and adapt as needed.

3 - I try to stay positive, the kids respond better if I am presenting as happy and in control, otherwise they start to get anxious and it can quickly spiral into refusal and meltdowns. Remaining positive that we can handle this and that we can work through anything life throws at us helps everyone manage.


Wow some really helpful tips there, thank you so much for sharing. So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Riko and her amazing three boys.



 
They are rather cute and amazing.



The boys are clearly really benefiting from your awesome parenting techniques, tell us those bits about your boys that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?

Well, eldest is really smart, he's always been academic. He can also be the most polite and well mannered kid. But I also enjoy his 'wicked' side, he can be so funny and quick, I enjoy spending time with him because we get along so well. He sounds amazing, its lovely to have a child with a great sense of humour, Lola loves having a bit of banter but Stanley really struggles with this side of things.

MC (middle child) is such a cheeky character, he's funny and dramatic and loves slapstick comedy. He can be so loving and say the sweetest things. He loves numbers and counting at the moment and can create brilliantly imaginative creations out of his toys. That's brilliant, Lola too loves counting, she counts everyday things, like the wooden banister and the shutter blinds.

Youngest has such a zest for life, he finds everything funny and his laughter makes everyone else laugh. He's a big stimmer and I love to just watch him being his fabulous self. He doesn't speak much but you can easily tell what he wants, he's so sharp and knows how to get what he wants without saying a thing. Wow that's great! honestly you're amazing and your boys are a credit to you and a true testament of your strength and determination.


What do you find most Joyful about your wonderful boys?

I love that all 3 of them are so independent. They will try to do things by themselves first and are quick to learn life skills because of this.

They all have their own different personalities and quirks; eldest is dependable and mature, but also witty and cleaver. MC is funny and charming and sweet and a little monkey. Youngest is adorable with a laugh that is very contagious.


What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.

Its really important for carers of autistic children to take some time to re charge batteries, and look after their self, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

I don’t get a lot of alone time so I try to find small moments throughout the day for 'me time'. I'm not against putting the TV on to distract the kids while I grab a quick coffee. I like to put music on while I do the dishes which both helps me manage the demand and also helps relax me. Sometimes I hide in various rooms of the house and pretend to be doing housework and other times I will engross myself in a book or game or online just to get a bit of freedom.

Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so do they have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

We unschool so the boys tend to get a lot of time to do their own thing. Eldest has his own room so that's his safe space to get away from his brothers. The younger two play outside a lot which I'm sure gives them some freedom and lets them burn off some energy. Play is very important so the boys are often doing what they love. If we've been busy I always make sure the kids are free to relax for several hours afterwards. Bath time is a great stress reliever for the younger boys too.

I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.
 

Finally we all want to know about the biggest milestone that you or the boys have accomplished in recent months?

Recently Youngest has started waving 'bye' to people when we leave a place, he has also been eating a more varied diet, big milestones in my books. He would probably see figuring out how to open the doors in the house as a bigger milestone though, but he's not the one who has to go chasing after him lol. Oh Bless him! so some definite motor and communication milestones there. That's amazing and so great to hear. Oh no the running!!

MC has really gotten into math and has started counting by himself, I think this is a major milestone. There's nothing better than learning through play and enjoying what you're learning rather than it being forced. I hope that love of numbers will take him far. I am sure it will, numbers is always a great achievement and one that cane be used in every day life all of the time, really really valuable for those life skills.


Eldest has had so much to cope with in the last year, many changes and disruptions and he's handled it all brilliantly. I couldn't be prouder. So Eldest has been making some brilliant emotional achievements you should be very very proud!

And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and your family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.

Thank you to Riko for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important beginning of the week in high spirits.



If you'd like to follow Riko and the boy's journey then you find them on FB HERE: Riko's PDA Page.
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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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