29 December 2016

The ADHD Taboo

ADHD shouldn’t be a taboo subject

When my kids first started school, I came across parents of children who were describing other children that were displaying negative behaviors and who were diagnosed with Attention Deficit Hyperactivity Disorder - (ADHD) or Attention Deficit Disorder - (ADD) as just naughty children and that the parents were using ADHD as an excuse for their behavior.

I heard things like –

 “Oh that kids on Ritalin, his mum makes out he has ADHD but he is just naughty”

Firstly – do you even understand how hard it is to get professionals to listen to you about your child’s ‘behaviours’? And secondly, do you have any idea how much time and effort parents like me, have put into researching, or persuading GP’s to make these referrals - only to be told to go on a parenting course - Most families get turned away at a first appointment after not only spending just half an hour with a clinician to be told to go on a parenting course but they most probably noticed symptoms at an early age, to be told referrals could only be made when the child reached age 6 and then put on a waiting list that was about 2 years long.

Do you really think we have the energy to do all of that because we can’t be arsed to discipline our children correctly?

These appointments aren’t just being offered to anyone and everyone that believes their child has ADHD because they are uncontrollable and unruly. They are like gold dust. There needs to be a set of evidence to even get through the door, and then most places have a triage nurse that will call you and they decide on the urgency of need.  Most of us fight tooth and nail for our children and often the strength needed to fight these systems leaves us exhausted and diagnosed with conditions of our own that are caused by severe stress. Trust me we aren’t going to put our families through that just because are children are naughty.

The child’s school gets sent a questionnaire directly, which they do not have to share with you so you have to wait about 6 months to find out if they have put contradicting evidence down resulting in a refusal to assess. This can be severely detrimental to the mental health of these children and their families.

I was lucky to have gotten such a good clinician that she saw through the schools report and sent a psychiatrist in to his school to do an assessment there. Luckily she had because he could have ended up miss-diagnosed based on one schools uneducated and simply ignorant form filling.

ADHD isn’t a behavioral problem. 

Yes it is associated with bad behavior but this condition is proven to be neurological. Children aren’t behaving this way on purpose, because they are parented badly or because they lack respect. They simply cannot help it.

And trust me I wish my child didn’t suffer with ADHD. I wish I didn’t need to worry about her and her siblings safety at every single minute of every single day. I wish I could leave the house with all three of my children and enjoy long summer walks, or be able to go and do a food or clothes shop with them in tow. Do you know what else, I would also love to do? be able to take my child into the school playground to pick my other children up, without people judging or sneering at my hyper – active, child who doesn’t listen to a word that I say, instead of sitting in a designated disabled car parking space, waiting for my 9 year old to finish school and walk to the car so that we are all safe. 

I wish that it was my parenting that causes my child to behave in this way.

Because then at least I could change my parenting, but I simply cannot change my child’s brain.

People need to stop turning their noses up at ADHD and start educating themselves on the real facts. They need to start respecting these children for who they are. Respecting their parents for the fight they fought for their children and the way they navigated a system that is like driving whilst blindfolded and handcuffed, because that’s how it feels when you first approach anyone with suspicions of ADHD.

I can almost guarantee that I am not the only one who often doesn’t offer the information that my child is diagnosed with ADHD. I bet I’m not the only one who doesn’t offer the information because it is such a taboo subject. People simply need to understand, so that more families like mine aren’t thought of as a bad egg, a family that doesn’t parent appropriately and has children who are naughty.

My child doesn’t run away from me into roads on busy car parks because she’s ignorant and disrespectful, she has impulses that she cannot control, not that she wont control. That coupled with the added inability to understand consequences to her life mean that the risk is even more dangerous.

Please be ADHD aware. 

Please respect these children.

 Please respect their parents. 

I work my butt off trying to teach my daughter about how dangerous certain situations are, please help me and families like mine to teach our children instead of being judgmental and chastising, gossiping in the playground and Chinese whispers about other children. It isn’t fair. If you have questions about our children we would be more than happy to answer than. At least give a chance to defend our selves instead of giving others the idea that is simply wrong and misleading. Lets all be there for each other instead of alienating people because you don’t understand.

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27 December 2016

Chapter 6 - I was going out of my mind.

A Journey into the Unknown

Chapter 5 consisted of us being referred and discharged immediately from community peadiatricians and made to jump through hoops, consisting of parenting courses. My daughter was deems a child that was an extreme version of normal – who had tiny traits of autism, which would eventually go away. After I had received the report from this appointment  I was so disappointed I complained until we referred again for her hyper – mobility and to have a thorough assessment of it with an expert.

Before we get to the bit where Lola got to see someone for her hyper-mobility, we have 9 months to get through. This chapter is going to be about all three of my little beauties as it's actually a key year. 
My youngest was a very poorly baby who was always ill, I think in 3 months since she was born we had called out two ambulances for her, one because of her temperature and breathing where she was put on a nebuliser in the ambulance and another because she had tonsillitis so badly that she had a febrile convulsion because of the temperature rising so high. She was just like Lolly, her skin would be all motely and her hands, feet and mouth would be blue, even her tongue.

In fact she was worse than Lolly, but again I was used to this and so it didn't worry me too much, there would be no warning for any of her illnesses, one minute she would be fine and the next she was convulsing with a temp of 43c. I was so scared, and just like the time with Lola choking I couldn't cope with seeing my baby passed out, I was so upset and I knew I wasn't doing any good with her in my arms so I passed her to Kenny, who brought her round. While I spoke to the 999 operator and packed her hospital bag. It's weird isn't it because if it was any other child but my own I would have been calm as anything and dealt with it appropriately, 

This was number 2 on my most scariest moments list After Lolly choking! I was distraught. Shaking, pale. She was only tiny! What was happening to my children why could their tiny bodies not cope with a cold, or any thing. My boy was a very healthy baby and had nothing more than a common cold. I didn't know any other family who was in and out of hospital with their children as much as me at that point. I felt like I lived there. Lolly was so upset, she didn't understand, she thought that I wasn't going to bring Connie back home and I just had to leave her knowing she was so confused and upset, but my baby needed me, I had to leave her. Tonsillitis was diagnosed and we were discharged. It wasn't long before we were back down there, she had bronchiolitis, and whooping cough. She was practically foaming at her mouth, it was very watery, her skin was pale, and dry and She was very, very poorly. Was given some strong antibiotics and sent home. She picked up immediately on these and was happy and healthy again. Not for long, though.

It was Christmas soon of 2012 and we had booked a lodge in wales to spend Christmas, much to the dismay of our family, but we needed a break, we needed to get away without the worry of anyone else or the big get togethers over the festive period. These were particularly hard for us as a family. Lola didn't understand at all about birthdays and other special occasions. If you said happy birthday to her she would repeat it back love her, and still does.
She gets particularly anxious, lots of unstructured days, lots of visitors, bringing presents and having dinner it confuses her. So we decided to go away, a nice lodge with a hot tub in Wales. One whole week of relaxation and hopefully some snow!
It took us 8 hours to get there, Lola was an absolute nightmare, she was screaming, setting the others off, Connie was only little and needed changing and feeding often. Lola hated the car seat, hated the music, hated everything. It was the worst journey in the world. In the end I had to pull over and swap her into Kenny's van. She was not a happy girl, not even the promise of the hot tub when we got there could persuade her to calm down. We were soon learning that journeys with Lola were practically impossible. We weren't prepared, we didn't know about distractions for her disabilities because at that time she was just an "extreme version of normal" we weren't given any strategies to help her or us, we just had to deal with it, get on with it, punish her, make consequences for her behaviour, do her a reward chart, And wait for a parenting course to help me be a good parent. Eventually we arrived and unpacked after my car had broke down in the middle of nowhere with a screaming hungry baby, and a screaming anxious toddler and It was amazing, kids jumped straight in the hot tub, and we chilled with a well needed glass of wine and prepared for Christmas.
Connie was poorly again and she had a cough and cold and high temperature. She also came up in a rash! It was blanching though so it wasn't a worry. She got over it quite quickly this time thank god!
It rained the whole time we were there, we literally had to stay in and make do. Christmas was quiet and peaceful and very relaxed.
Lola didn't understand climate change Or couldn't feel certain temperatures she would want to wear shorts in the winter if it was sunny and try and go out with big coats on in summer if it was cloudy, It was a bit of a worry because once she had her mind set on an outfit, she would be adamant she was wearing it, and I swear nothing could change her mind. We did though in them days, we made her change clothes but the repercussions weren't worth it, and our motto now is "if it isn't harming her what's the point" if we went on holidays in winter to the coast she would want to go swimming and could
Not understand she wasn't allowed in the sea. It was almost like she was saying why are you bringing me to the sea of it's too cold for me to swim in? Logical really for a child, but "normal" children would understand after it being explained. No amount of explaining it to her would help her understand and so we would just let her find out herself.

It took us 2 1/2 hours to get home, big difference from 8 hours on the way there. It was good to be back. But then the realisation of back to work and back to school hit. I was also due to go back to work and needed childcare, so we hired a nanny, she came and worked three days a week, taking the kids to school, and picking them up and looking after Connie Mai at home. She would do the general tidying up. Lola was very difficult for her. Our routine was hard because Lola done odd pre school days so it was quite hard for her to get used to. She never listened to the nanny and was just generally difficult. At this point, Stanley had started regressing - academically he got left behind. He was in year 1. He was fidgety, inattentive, and disruptive. He was the same at home. We said before they were like chalk and cheese, and it was getting worse. We put it down to me going to work. I hadn't worked at all since having him so maybe it was just too big a change. His teachers in his class were changing all the time, which didn't help, the whole way through year 1 he and the other children were passed from pillar to post. He didn't cope well. His writing and phonics took a dive, he couldn't read, would not do any work at home at all, and eventually I stopped fighting with him about it. I refused to spend my couple of hours in the evening with him getting stressed over reading and homework so we left it.

At home he was gaining independence and becoming disruptive and belligerent Stanley withdrew further from me, not only did I have to spend practically 90% of time with Lola but Connie was poorly, with all her infections, she also had severe silent reflux, she got to the point where she would see the bottle and cry! She was in agony every time she fed. I went to the doctors and got her some special milk the same as what Connie was on after trying all the other things they ask and it still didn't work, I worked out she was also lactose intolerant so I went back and got one that was lactose free. She started feeding again, and began to be a little happier, I had to eliminate all lactose and dairy from her diet. She had a constant rash around her mouth. 

So with all of this going on, I guess he had to fend a little for himself, he learned to make his own breakfast, get ready himself in the mornings and just sit there watching TV whilst I ran around like a headless chicken. I was still shouting, I didn't know what else to do. At this point it was a habit. I found it hard to lower my voice and be reasonable I was majorly stressed out. I had turned into that person who threatened to "call daddy" when the children were being naughty and I hate that! I always said I would never do that, what's that proving? It's just proving to them that you know they don't respect you or listen to what you say. He used to listen once but not no more. I felt like he hated me, I desperately wanted I bring him back to me but I didn't know where to start, How do I do this? Where the hell am I going to find the time to make a child love me? Well I tried, and I tried and I tried to be a good mummy, to listen to him, show him attention but I just didn't have any patience or time or motivation, I was in catch 22, again every time I went to bed I swore I would be a better parent the next day, then I would spend all night up with Lola screaming for what I thought and was told was nothing more than night terrors and when It was time to get up I was exhausted, and had to get her dressed, which took over half an hour, and the brush her teeth which took another half an hour, with lots of screaming and growling and lashing out. So again I had no time for Stan.

When Stanley wanted to play with Lola she just annoyed him and made him moan or hurt her, when she wanted to play with him he ignored her or wound her up. At this point they were both struggling for control. Not one of them wanted to give in, and Stanley was so stubborn to the point of even choosing to play on his own instead of with her. He would walk away find something to do on his own. It was a major problem. If he couldn't be in control then you couldn't play his games, it had to be his games, and no one else was allowed to make something up or have any ideas. I was going out of my mind, What was going on. I was once the envy of other people. My children were so well behaved, when Lola was a baby and Stanley a toddler they were great I could go anywhere. I had visitors all the time. Not any more they were constant hard work. Will it ever get better? I certainly hoped so.

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23 December 2016

When i realised why my child has meltdowns AFTER school - Coke Bottle Analogy

Telling the difference between a meltdown, sensory overload, or tantrum can be quite tricky for people who don't understand your child's' needs fully.

Do those working with your child understand their needs fully to know when a reaction is imminent? 

I say reaction and not action because it occurs when something has happened that triggers a response that he or she has no choice over, making it an unconscious reaction as opposed to a meaningful action.

An action is something that is a choice.

My daughter doesn't choose to behave this way., and Sometimes it's impossible to tell the difference, whereas other times I can see it from a mile off, just from little behaviours, the way she acts, or the way she talks. Sometimes with just a glimmer in her eyes.

There are lots and lots of things that trigger these reactions from Lola. And sometimes it can be over the smallest of things, like the straw that broke the camels back for example.

I don't know whether you've heard of the coke bottle analogy but here goes.

(I once described this analogy to a teacher to help them understand why Lola behaved like she did at pick up time when I got there.)

 Coke Bottle Analogy

Imagine I have a bottle of coke.

your child wakes up in the morning and instantly there are demands placed on them to get ready for school - getting dressed and washed and going downstairs.

The clothes they're wearing feel uncomfortable.

Tags and seams are either too long or too short (my daughters are neither in my opinion but to her they have to be just right!)

Remember that Coke bottle you're holding?

Shake it a little bit.

Breakfast time, and there are too many choices, the TV that little one is watching is too loud making it impossible for the child to concentrate. They end up choosing the wrong thing and getting distressed because they're hungry 

It's time for shoes and coats on now, where did they leave them yesterday? 

You have to find them or you're going to be late otherwise.

Getting into the car now and putting the seat belt on, they're being restricted and the seat belt hurts.

Again shake the bottle a little bit.

You've arrived at the school now and getting out of the car, gathering up all the belongings, you realise you've left the P.E kit at home, walking in to the school and there are people everywhere.

Where should she look? 

Who's talking to her? 

Someone is calling her name? 

Where's it coming from?

Oh mind that curb, don't go into the road "Say hello darling"

Going in to a class now where there are thirty children running around excitedly, the teacher yelling, this way no that way, coats up, sit on the carpet.

Chairs are scraping, lights are whirring, lots of decorations everywhere.

Thirty bodies moving simultaneously.

It hurts.

Shake. Shake. Shake.

They are starting work now and she doesn't understand, she can't communicate this, so she does something else, gets told off for disrupting, or wandering aimlessly.
Shake it some more. 

Phew its break time, but she is she's thrown to the wolves - again lots of sensory overload, lots of bodies moving everywhere. 

Go and play Lola! 

Play with what? I have no imagination!

Play with who? I have no friends! The smell in the dining room makes me feel sick.

Shake. Shake. Shake.

"Do your work!" 

"More work time? I'm tired, I'm hot, I'm hungry, I'm thirsty, it's too loud, it's too bright, it's too busy"


I need to move, I need to fidget, I need something to chew on... 'Oh here I'll just unstick this page and eat the blu tac.'
Shake that bottle harder.

It's assembly time now you're making me line up, walk carefully, and sit down. I can't sit still, I can't be quiet for that length of time and it's all just too much. 

Fidget, fidget, grunt, grunt, growl, growl

Kids are whispering and the teachers are tutting.

I copy them because it sounds good and I'm asked to leave. Why is everyone staring at me?

Keep shaking that bottle

It's home time now we have to find our coats and bags, ans try and carry them all, clumsily tripping over the strings on the bags.

It's crazy in the cloakroom. 

Where's my stuff I'm sure it was here...


Bump, trip, stumble, bang

Shake. Shake. Shake.

DO YOU WANT TO OPEN THAT BOTTLE?  Nope I didn't think so.

But I have to find a way to open that bottle slowly to release the fizz because if I don't the consquences are a nightmare.

Sometimes I'm not quick enough and it just can't stay closed any more.

It just goes pop bang and fizzes everywhere.

Sometimes it's when we get home, other times it's in the car on the way home but sometimes it's as soon as she comes out of the classroom.

It's like the straw that broke the camels back.

She has been holding it all in all day and then I pick her up and ask her to put her belt on and all hell breaks loose.

I have learnt to not talk to her much at pick up time, even when she asks me questions I side step them so as to avoid the inevitable confrontation.

It can be about anything.

Even something that wouldn't normally bother her can trigger one of these reactions.

I have to be so careful when I collect her from school and if she's is in a flighty mood I need to make sure I move swiftly to the car, to avoid a meltdown. The last time it happened she was hysterical, on the floor, banging her head on the concrete screaming her head off it was heartbreaking.

The bottle exploded!

I want to avoid that again at all costs.

Previously written for and published by Firefly Community

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21 December 2016

My Child is not weird

This is to you, the parent of a small child at soft play centre we visited today. 

You were with your friends all enjoying a natter and a cup of tea, whilst watching your small children play.

I'm sorry my daughter was staring at you.

I'm sorry that she stood so close.

I'm also sorry that instead of leaving you to it after having stared at you once, she came back time and time again and stood there dumbfounded not speaking, but staring once again.

My child is inquisitive, curious and interested,

She's a puzzle, of a million pieces, that have no edge,

No limits, left open for the world to add too, making her puzzle a trickery of games.

She's exhausting, and frustrating, she's confused and puddled. 

Her mind is like a thousand intertwining rivers, bending like the Mississippi, her thoughts swimming up stream, her mind tiring with each twist and turn the processing takes.

She wanted to speak to you, she wanted to tell you how cute your baby was, she wanted to ask his name, she wondered why he was crying, and screaming. And she almost certainly wanted to give him a cuddle and say hello to your beautiful baby boy.

She is NOT weird! She is interested.

Most of all though I am sorry for not being sorry for all those things, the only thing I'm actually sorry for is your attitude.

I'm sorry that you felt compelled to raise your eyebrows at your friend and direct them to my child, I'm sorry you had to nudge your other friend and practically point at my child to show her she was staring. Yes we all saw her, even your friends.

I'm also sorry that no one ever taught you how to talk to small children, I'm sorry that you were taught to laugh and mock and judge small children because they "look" different.

I saw you mock, and I saw you judge,

I saw you nudge your friend and raise your eyebrows. Any idea how people like you make me feel? Infuriated is how!

Ever heard of a simple hello? She's just 6, she isn't going to bite off your arm,

(although actually I wouldn't put it past her)

Next time, set an example. 

Say hi, ask her name, If she's having fun, she may not answer you, she may run off, she may be surprised at the sudden interaction. But at least you wouldn't be mocking her. At least you'd be leading by example. Maybe you could also kindly teach your own children it's nice to be nice..........

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20 December 2016

Im Sorry - We try our hardest, we really do.

I'm sorry I couldn't be of any help today -  At the school, when you needed the parents to pitch in to help clean up the gardens.

I'm sorry I never baked those cakes - I promised the kids and I, that I'd make for the cake sale. But we made up for it by buying Ten pounds worth. 

I'm sorry I didn't have the time to fill out all those parent questionnaires or online surveys, for the school. 

I'm sorry I'm always late with dinner money, and trip fees. 

I'm sorry I never manned a stall at the summer fair - or even attended to support you. We really wanted to come I promise we tried. 

I’m sorry to my child for forgetting to print those important family photos - That you need for your topic, "all about me" I feel really bad I could've cried when I saw all the children bringing theirs in and you were empty handed. 

I'm sorry I forgot your PE kit again, I did bring it back for you though. I tried. 

I'm sorry that I forgot it was your class assembly - This morning, when you got a certificate for settling in to year 1 really well. I told you a little lie. I wasn't standing at the back; you see my life has been taken over with Special education meetings and hospital appointments. I forgot. It hurts. 

I'm sorry that we forgot it was your friend’s birthday party on Saturday - I wrote it down, and I RSVP'd, and somehow the weekend just passed us by. I'm sorry I made you miss you out. 

I’m sorry I sent you to school in non-uniform -  A week early. I didn't get the memo that it had changed. Again I'm sorry I sent you in uniform when it was dress as your Hero day, I must not have got that memo either.......

When you both were waiting for me on the field in school for our family picnic day, I'm sorry I didn't have a chance to tell you I wouldn't make it - I was called to an urgent meeting and it was vital to attend, I made sure you had another parent to sit with though, but it still doesn't take away the guilt I felt that day. 

I'm sorry I never made it to your trip with preschool - I was supposed to come but I had to work that day, I was told you had a good time. 

I'm even more sorry that when it was your sisters turn for that trip two years later - I had to arrange for her to go with staff because yet again another VERY important appointment was made at the chosen SEN school and I HAD to attend. I'm even more sorry that because she didn't have an adult with her she was allowed no ice cream, she was not allowed in the splash pool, and she burnt to a crisp! I was very sad that day. 

You see, being a parent of a special needs child impacts the whole family. Not just the child with special needs. There's lots of things I could have written here, there's lots of things I've missed out on, my children have missed out on. I feel very guilty for not being able to fulfil everything that is required of me as a parent. 

But most of all I'm sorry that this has to happen at all

I'm sorry for every other parent of children with disabilities that feel like me on occasion, or even for some people every single day. You shouldn't feel guilty. And you shouldn't feel inadequate. 

You do your best every minute of every single day. 

You are a GOOD parent. 

You see, the reasons that I missed loads of these things. Or forgot to do others isn't because I'm a bad parent; it isn't because I don't care or I am lazy or just so damn unorganised. 

It's because I do care, and you do too.

Because each time I've forgotten or missed something, is because I was advocating for my child, or working to provide for them, or just simply because there was so many things to organise in my brain for all of my three children, two with disabilities and a disabled partner that I don't get to enjoy you as I should. I want to enjoy you; I want you to enjoy me. But I need to protect your future. I need to advocate so strongly that I'm missing out on your happiness. 

I'm hopeful that this is beginning to change now we have the appropriate schooling for you all. It took a few years, and a lot of hard work. But the impact it's had already is immense. 

I love you all, and I will never give up. 

But while things are settled, we will have fun and we will enjoy each other. 

So if you feel like a failure, just remember that while you were missing that assembly, you secured an EHCP for your complex child with numerous disabilities. 

And when you couldn't make that summer fair, you'd just spent two hours trying to calm an anxious child in the middle of a meltdown. 

When you forgot to bake those cakes, it was because you were reading soothing stories to your children who couldn't sleep that night, and placating the others because of the violent outburst that ripped through the whole family. 

When you missed those school trips, and family school gatherings, you were accompanying your disabled partner, or your disabled child to a very important hospital appointment for an MRI scan.

Be proud of your self, be proud of your children and remember, that love is what is important. And above all else, give yourself a break; stop being so hard on yourself. You’re doing an amazing job.

Originally written for Firefly Community.

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