Maybe I shouldn’t have titled this blog post ‘Things I hate about ADHD’?  It’s not actually things I hate about ADHD, it’s more things I hate concerning ADHD.  I feel like I’m about to have a real moan today. I need a vent and I think you will get where I am coming from!

ADHD Diagnosis

How difficult is it to get a diagnosis?!  I get that you must make sure it’s nothing else and that specialists don’t want to diagnose too early. But the amount of paperwork involved is beyond ridiculous. There must be an easier way? Even online forms would help so you could cut and paste.  Any parent dealing with a child/children with ADHD has enough on their plate. Without filling out what feels like endless repetitive paperwork!  I would spend hours doing this when I had far better things to be getting on with. Like researching how to help my child for one! I know it must be done, but why do you have to repeat yourself so much?  It’s like none of the agencies are linked?!

I knew my daughter had complex needs from a really young age, you couldn’t not. I was aware of what a tantrum looked like; she had a twin. Her tantrums were incredibly different. I was passed to so many different doctors that told me it could be this. Or it could be that. Try this line of discipline, this diet, time out! Honestly, I could write books on things that were suggested and didn’t work. 

I know we must err on the side of caution, and not diagnose a child too early. But there should be an awareness that ADHD does start to show early. It isn’t a naughty child. Training staff in nurseries and schools to spot any early signs of ADHD would be amazing.  Putting strategies to help these children, super early on would be incredible!  Keeping detailed documentation on these children’s behaviour from an early age, and any little signs would be so helpful.  It doesn’t mean the child should be ‘labelled’ for life. If they have sensory issues, for example, not being able to cope with too much noise or the feel of things. Keep a note in that child’s folder!  My daughter would always drag a chair over to sit on from an early age rather than sit on the floor.

They may well grow out of it.  It may well be an ‘age thing’. But if it’s not, the parents and the next school setting have keynotes to take forward and continue to watch for a pattern.  If the behaviour does continue then this can be passed to a paediatrician, who can see how long the behaviour has been consistent for.  It is not good enough to wait till they are in primary school for these issues to be spotted, strategies put in place and eventually paperwork submitted, to then be told to take notes and document what you have seen.  This is so much wasted time that is detrimental to the child.

I was ‘lucky’ I guess, both my children displayed very ‘visual’ ADHD.  However, I have read so many battles that parents have had to go through trying to convince a school to help them get a diagnosis for their child.  For instance, if a child has inattentive ADHD symptoms, these are often missed by staff and put down to being a ‘day-dreamer’.  This is where good training and awareness come in.

But it’s not over even when a child has been ‘flagged up’, because then you have the wait for an appointment to get an ADHD assessment and this can simply be a case of where you live. The average wait time is 18 months to, at worst, 5 years. 5 years?! That is way too long to help a child in need. A child that cannot conform to the requirements of a mainstream classroom. Their self-esteem will plummet in that time. It is simply unacceptable. So much damage will already have been done. Imagine telling a parent of a child in a wheelchair that it is going to take 5 years to implement a ramp to access the school?

Schools

Sometimes you read of amazing mainstream schools that have fantastic pastoral setups for children.  Or you meet a teacher that really gets it and has gone above and beyond to try to understand ADHD.  This makes me so happy.  Unfortunately, not all schools and teachers are like this.  And I want to know why!  With ADHD so prevalent these days, it is thought that between 2-5% of school-age children have ADHD, why are so many teachers/schools still so ill-prepared to deal with it?  ‘If a child can’t learn the way we teach, maybe we should teach the way they learn’ (Ignacio Estrada), love this saying.  It’s so true. 

Schools are slowly moving on but so very slowly.  Life has changed in so many ways and so must school life.  Instead of making a child feel like a failure because they can’t sit still, or they are impulsive let them know it’s ok and put strategies in place.  They can’t help it!!!  Another fab phrase is, ‘Children do well if they can’ (Ross Greene, The Explosive Child), very few children actually enjoy being shouted at, I mean that’s pretty obvious right?!  I wish that all schools would uniformly have to enforce a set training plan and facilities for children with complex needs.  

Whilst I love to hear about amazing schools, it shouldn’t be that some are and some aren’t, they should all be pretty much the same.  If one school can accommodate, so should another.  And teacher training in ADHD should be essential along with school safeguarding training.  It’s equally as important as I feel!

EHCP process

An EHCP (Educational Health Care Plan) is a document that provides the guidelines for the education, health care and social care needs of a child who needs extra support in a school setting.

Another total ball ache! Sorry, but it is. Yes, there must be detailed notes and documentation but my goodness it goes on and on and on.  You finish filling out one form only to have another practically identical form sent through.  I know my children’s NHS numbers off by heart now, as well as my doctor’s surgery phone number and address, kids school postcodes, inside leg and head measurements! Ok maybe not all that, but again the process is so repetitive.  You feel like you are having to prove how bad you’ve got it.  That you must put a worthwhile case forward.  My child has ADHD, a hidden disability, it’s bloody tough, don’t doubt me! 

There are five stages to an EHCP those being; referral, where someone such as the parent, school or another professional connected to the family requests an assessment; the LA (Local Authority) consider whether to conduct an assessment; Co-ordination of Assessment, whereby an EHC plan coordinator gathers and collates all relevant information into a summary assessment; the LA professionals decide whether an EHCP is required based on this information, if yes a draft EHCP plan will be written and sent to professionals and parents for review (this is when you can request a particular educational setting); EHCP is signed off by LA and issued to the parent/carer of the young person. 

The process is supposed to take a maximum of 20 weeks, please tell me if it has ever been this simple for you?  I would love to be able to pass on success stories and give hope to those starting out on the EHCP journey.  The LA can decide against an assessment if they feel the school could be doing more for your child first.  So, then you must wait for the school to implement these strategies and then document how successful your child have been before reapplying if necessary.  Again, I was ‘lucky’ with this, my daughter got her EHCP straight away.  She was so disruptive in class that it would have been silly for anyone to deny it. I called their office (EHC coordinator) A LOT. I mean every couple of days to see if there was any update. Life was becoming unbearable at home, I was desperate!

General lack of understanding and awareness surrounding ADHD

I still find it so hard to bear the looks when your child is having a meltdown or behaving so badly.  I have ‘toughened’ up in a sense but it’s still not a pleasant thing to deal with.  And to be honest, we shouldn’t have to.  Why is there so much ignorance associated with ‘hidden disabilities’ still? 

My prime example of lack of awareness, which still makes my blood boil, was at an airport.  Having succeeded in getting my three children back home to the UK from vacation, two with ADHD, I was feeling pretty pleased with myself.  However, customs decided to put a spanner in the works and the queues were enormous.  We had to go through the family side, which was moving at a moonwalking snail’s pace.  My daughter had been brilliant.  She had her ear defenders on, sunflower lanyard, fidget toys, you name it, we were prepared it.  However, I could see it was all beginning to wear thin and could read the signs of an imminent meltdown, I didn’t have long.  Now she was a tall 11-year-old at the time, although still, little girl looking. 

I left them in the queue and approached a female security guard and told her my daughter had ADHD,  that she did have a sunflower lanyard and she was about to have an almighty meltdown.  She nodded as if she got it.  Said come with me so I signalled to the kids, and they came through the ropes. 

When she realised it was my daughter, this tall child, not a toddler, she rolled her eyes and marched off in front of us.  We followed and were taken to a fast-moving queue of a couple of people.  I thanked the security guard and she turned to me and said, ‘Be it with you and your god if you are telling the truth’.  Seriously?!  Now, I had to bite my tongue at this point.  I was knackered and so close to being safe in a taxi home with my three children that I did not want to jeopardise this.  But I wanted to scream.  How dare she?!  Clearly no understanding.  ADHD must only be for small kids who are visibly red-faced and lashing out, which to be fair my daughter would have been if I had waited too much longer! 

Honestly, I was livid.  So, yes, I would like awareness to be raised which is one of the reasons I started this blog.

ADHD Medication

I won’t rant on about the stigma surrounding ADHD medication as I have done an entire blog post on ADHD medication and the things I have heard.  My children take it, and it has been extremely successful for them.  It is a very individual thing and very much a personal choice. 

No, my rant about medication is different.  ADHD comes with many sensory issues, a well-known fact.  So, why does ADHD medication have to be so difficult to take?!  Capsules that get stuck in your throat!  Or that you can open up and take with apple sauce? My daughter would gag on both these options.  We had to stop.  Next, she went onto a liquid form, but she had to take too many millilitres for her dosage size that she simply couldn’t consume that amount of liquid without gagging.  We are now on a hard tablet, like a tic-tac.  This has been her best option so far but she’s far from impressed. 

Our children with ADHD have so many issues with food etc would it not be wise to have made some sweet, cola-flavoured medication?  Obviously kept by the parent/carer so that they are not taken as candy!  The number of times I have read about troubles parents have getting their children to take ADHD meds you’d think someone could have come up with a nicer option!

CAMHs

CAMHS (Child and Adolescent Mental Health Services) is obviously a great service and one we should be grateful for.  However, every time we go, we build up a rapport with the paediatrician, the kids feel safe, which as we know is a key point for children with ADHD.  If we are lucky, we get to see them two to three times and then they leave!  Honestly, it’s not just once it has happened, it’s all the time.  I’m sure they head off because they are overworked and underpaid and the private sector is calling.  I mean I don’t know but there must be a reason they never stay?! 

Then of course you must sit with them and explain your life history all over again.  I’m not joking.  I have had to go right back to how my pregnancy was, the birth, and breastfeeding to about nine different doctors.  Why is this not in their notes?  I feel like I should prepare a CV for each visit.  Add to that I have a child with me that can’t sit still, and you want to go back to the beginning of time?  Each time?!  Think I should write to the government about this one and ask them to increase salaries, so they stay. 

Oh and whilst on this rant, when they are in the initial stages of trialling a new medication, why oh why can they not email the prescription to your local GP’s for collection?  Oh no, that would be too easy!  I have to physically go and collect the paper version from their offices, an hour’s round journey.  Now I would do anything for my kids and pretty much do, but I hate wasting time, and this to me, with such advanced technology, seems ridiculous.

I’m truly sorry if I have totally depressed you with this week’s blog post but I was sitting in bed the other night thinking about how bloody tough certain things were for the ADHD community.  I thought about how so many issues could be made so much easier.  Let me know things that annoy you.  Let’s have a rant and get it all off our chest together.  I know it’s always nice to know that there are others in the same position as you, so you don’t feel like you are going mad or at least going mad together!

Whilst I certainly haven’t solved any problems with this post, I always feel better about getting it down on paper.  Who knows, someone may read it and have a brain wave of how to fix one of these issues?

I have started a private support group on Facebook for parents and carers who need support with their child with ADHD. It’s a friendly place to chat with others. Please do click this link ADHDinchildren to join. And for anyone on Instagram, I’m there too ADHD Mum.

Vicki x