A to Z Blogging Challenge - F is for.....

F is for Frustration

This is the definition given for frustration

Noun The feeling of being upset or annoyed, esp. because of inability to change or achieve something. An event or circumstance that causes one to have such a feeling. This is something we have faced on numerous occasions over the years when dealing with ADHD and ASD. It comes in many different forms from frustration as a parent, frustration of a sibling and frustration as a sufferer.  As a parent we have battled to get a diagnosis, rarely finding someone who took our concerns seriously and becoming increasingly frustrated with the repeated phrase 'he's just emotionally behind due to his prematurity' but there is only so long this can be said when we see no progress only things getting worse. Once we got that golden diagnosis we rapidly realised it didn't actually mean much other than an official name. We are now facing educational frustrations - ADHD is severely affecting our sons concentration span, a well documented symptom which is seriously holding him back in his learning but ADHD is not recognised as a disability that requires support, so he is falling further and further behind.  As a sibling Mini Man has had his share of frustration. A child with ADHD and ASD needs a lot more attention and managing than a neurotypical child and as a result, without even realising it Mini Man has very much been over shadowed - how this became so apparent will become clear in the 'M' post. Mini Man now shouts all the time and constantly interrupts but we are coming to the conclusion it's because as a young child this was the only way he felt he could be heard. As a sufferer Little Man faces daily challenges and frustrations and at times those frustrations manifest themselves in a melt down where he simply loses it and has no idea what he is doing. They are rare thankfully but an awful experience for all involved. He faces the frustration of being left behind in school, being forced to participate in group activities, of not understanding instructions unless they are very direct for example - can you put your shows on ' will lead to no response or action and he is left upset and frustrated by then being shouted at. Say it another way and say 'please go and put your shoes on' is fine, he does it straight away as it is a direct instruction, not a question as he perceives the first one to be. School can't adapt their whole teaching method to take this into account. We are now facing frustration that he is becoming aware he is different and behind. We all face frustration from time to time but a child or adult with ADHD or ASD faces a much greater degree on a daily basis

A to Z Blogging Challenge E is for....

E is for Education

Education is something my son is struggling with. He loves school to the point he cries every morning of the holidays as he wants to go, he loves the routine and knows exactly where he is and what he is doing - which is one reason they class him as being on the autistic spectrum. The holidays thrown him, the routine changes and he doesn't like it.

He is very keen to learn, he loves watching science programmes and then trying to recreate the experiments in my kitchen without me there (eek) and he is constantly asking questions to ask about things. His vocabulary and ability to hold a sensible conversation is also good, and in line with what you would expect for his age.

On paper however, it is a different matter. His reading age has been assessed as age 7 (he is 9), his spelling age 5.5 and they haven't even looked at his maths yet but lets just say he is still struggling with the basics and the 2 x table.

Frustratingly, there is little support. He will not qualify for a statement of educational need but he does need constant support to keep him focused and on-task. He doesn't even know his basic phonics, he cant tell you what sound 'ae' or 'oa' or 'er' make, which make spelling impossible for him. His homework is illegible but his teacher still gives him a star and tells him it is a lovely piece of work, well thought out etc, so he perceives this as doing well. While I understand to correct his work would be soul destroying surely they should be looking at it and seeing they need to work on his spelling and focus on common ones he can;t get.

There are reports to show that many children with ADHD are excluded from school, in some cases parents are being told to medicate their child or not send them to school - We are very fortunate not to be in this position, the school is very helpful.

A child in need of additional help should be put on an IEP - Individualised Education plan which gives them specific targets and works on areas of need. From an IEP, School Action Plus can be implemented.

These we have in place however the extra support he gets is dependent on what is available in school as he is not entitled to any specific funding. This for us is very frustrating as he is a bright little man who is struggling and being failed by the system, the way the rest of children are taught just does not suit him, I think he may be dyslexic as well and we are currently investigating this, but in the mean time he just falls further and further behind and there is only so much that can be done at home, by home time he is exhausted, not switched on and has had enough.

A to Z Blogging Challenge D is for......

D is for Diagnosis

Despite the thinking that ADHD is a very overdiagnosed condition and an excuse for poor behaviour, getting a diagnosis is infact not easy and a long process.

Our son displayed all signs of ADHD from the age of about 2 but we had to bang our heads against brick walls until he was 6 as they refuse to do any testing before this age. Nope sorry I lie. we do have written in a letter that we were a rare, special case where they had agreed to test prior to his 6th birthday but it wasn't the norm. That would be a full 19 days before his 6th birthday which as it is at Christmas, meant the final diagnosis was held up until after the holiday period so probably no quicker than if we had waited.

First referrals need to be made after numerous (make that 100s) of visits to your GP and health visitor.

You then see either the Child Development Centre or your local CAMHS (Child and Adolescent Mental Health Services) which one will depend on their structure. We skipped the CDC as our CAMHS had a paediatrician and child psychologist. However, there is normally a huge waiting list

The nursery or school also need to have highlighted concerns.

Your child will then be assessed to ensure there is no other reason for their behaviour, a physical examination carried out, intelligence tests etc, family background and circumstances are looked at and their teachers contacted.

Following this diagnostic tests known as DSM-IV (The Diagnostic and Statistical Manual of Mental Disorders,, 4th edition) is used and the Connor questionnaire for parents and teachers

The fact sheet published by ADDISS fully explains the different types of behaviour and symptoms your child must be displaying in order to even be considered for a diagnosis. It is an interesting read.

Spam, Spam, Spam, Spam, Spam

So I want to talk about Spam, not the tinned variety that I have nightmares about - spam and tomato sauce sandwiches which made me retch -yes really - I swear I will never put my kids through anything so hideous!) remember, but the electronic type of Spam

I am taking part in the A to Z Blogging Challenge and one of the criteria is to turn word verification off from your comments so it is easier for visitors to pop by.

Having duly done this though I am being spammed, the latest about genital products, yesterday I could enhance my manhood - bit difficult seeing as though I was a female last time I looked and loads with links in which quite frankly I would only click if I were VERY stupid but we are only 4 days into this challenge and the Spam is really doing the old noggin in already

I am going to take to the great oracle twitter and ask for advice but has anyone got any advice on how to Banish the Spam? (other than turn word verification back on)

A to Z blogging Challenge - C is for......

C is for Coping and Challenges!

ADHD and autism have brought with it difficult times, finding methods to cope and over come challenges.

We always knew deep down something wasn't quite right with Little Man - but that day someone actually said it, I suddenly realised I needed to learn coping mechanisms.

To hear the words that your 3 year old 'may have learning difficulties and is showing autistic traits' is devastating. I walked across that playground and didn't even bother to control the tears, I then sat for about an hour in the car crying picturing the lovely trolley collector at our local Sainsbury's who you heard people talking about and saying how well he was doing, they had heard he was living independently, had a job etc. At that point in time, in my mind, that was my son's future.

But you cope, you overcome the challenges, you seek help from places like CAMHS (Child and Adolescent Mental Health Services), the Child Development Centre, the doctor, his consultant. You try and see all positives - mine were:

• As a premature baby he was still under a consultant - a foot in the right door for help
• As a premature baby who we nearly lost more than once to be on the autistic spectrum with mild learning difficulties was actually pretty good going when you consider what could have been
• As a scientist, I at least understand, have databases of medical journals at my finger tips and lots of friends in the medical field, I was going to bang on as many doors as possible.

You cope, you have to and you amaze yourself just how you can adapt and overcome all challenges you face.

My Little Man amazes me day in and day out, and I couldn't be more proud of the beautiful, sweet natured, caring boy he is growing into.

A-Z Blogging Challenge B is for ......

B is for Behaviour

Definition in the Oxford Dictionary - the way in which one acts or conducts oneself, especially towards others

Behaviour is something that is paramount in children with ADHD and/or ASD.

Children with ADHD find it hard to control their behaviour and/or pay attention. An ADHD child will act without thinking, can display hyperactivity, and have trouble focusing and concentrating.

The expression 'live for the moment' sums my Little Man up totally. He has no thought process about what he is going to do, he thinks it and does it in the same moment. There are no 4 seconds between the thought and the action or 4 seconds after. He simply lives in the moment. After he has done something he can give you every reason under the sun why he shouldn't have done, or why it may have been dangerous, he completely understands, however, he does not have the thought processes to think about doing something, then think of the consequences, and then act. His brain is wired differently to ours.

Children on the autistic spectrum can display some challenging behaviours due to changes in routine, being over sensitive or under sensitive, being very tactile and needing to touch or place inedible objects in their mouth, hand flapping or simply having what appear to be tantrums through sheer frustration or violent behaviour.

Living with a child with one, or the other or both can be very challenging.

Many of the behaviours displayed though are a normal process of growing up, toddlers go through many stages, so at what stage do the alarm bells ring and you think 'actually this is not normal'?

A diagnosis of ADHD requires the following:
• the behaviour is demonstrated to a degree that is more severe than other kids the same age
• the behaviour appears before the age of seven
• the behaviour continues for at least six months
• the behaviour creates problems in at least two area's of life: home, school, daycare, playground

For us we knew from a very early age, at a year old, I was mortified when I collected Little Man from the childminder to be told he had taken to biting. She was very calm about it and reassured me it was normal and he was just discovering things and it would soon pass. It didn't. He didn't seem to understand being told off, he had no comprehension. From biting he moved to hair pulling, then pinching, then spitting, you name it, at some point he has had it in his repertoire. He could have almighty melt downs over seemingly small things - roadworks leading to a diversion - that took us about a week to work out, change in place at the table to eat, holidays. He was very tactile, he would start to stroke strangers hairs, anybodies hair. He would dive into buggies to kiss babies, he couldn't just sit next to you but had to be almost sitting on top of you. Despite all this, he is a very serious little boy, with a lovely sense of humour and one of the most loving, caring little men you could wish to know.

Behaviour has been hard, we are coming out the other side (for now) at the age of 9, he is learning boundaries, albeit slowly but he is learning. Over - learning is the key to everything!

A-Z Challenge A is for......

A is for ADHD

Attention Deficit Hyperactivity Disorder (ADHD)

www.ADHD.org.nz

There are still some schools of thought that ADHD is a myth, an excuse for poor parenting/bad behaviour/, and as a parent of an ADHD child I have come across many other parents who don’t see it as a real condition and have had to hear muttered comments such as ‘nothing a bit of discipline wouldn’t sort out’, ‘a good smacked bum would help’, ‘perhaps if she (meaning me) didn’t work, he would be better behaved’ and many more.

I am not disputing the fact that today we see many, many more cases than we did say 20 years ago, but is that to do with knowledge and better diagnosis? In the 1960’s ADHD was known as Minimal Brain Dysfunction, in the 1970’s conditions didn’t have names – my husband himself lasted 3 weeks in his reception class before my in-laws were told the school couldn’t cope with him and he spent a few years at a ‘special’ school before returning to mainstream – he has never had a diagnosis of ADHD, but I would bet my bottom dollar on him still being diagnosed as a 40 year old. It does go to show however it needn’t affect your life – my husband has a successful career and a degree before that.

Like many parents living with a child with ADHD or one who they know is not neurotypical but no-one will listen, we have suffered extreme frustration in trying to make people understand ADHD, being told by doctors it is bad parenting, bad behaviour, the terrible twos, then the terrible threes, home circumstances, or starting nursery etc, they always find a reason but as a parent you know, trust me, you know when your child is not behaving as his peers.

ADHD is infact a biological condition caused by an imbalance of the chemicals in the brain’s neurotransmitters. It affects the frontal lobes of the brain which is where impulsive behaviour control is. It is hereditary and long term, although symptoms do modify with age.

There are three main forms of ADHD:

1. Overactive and impulsive (hyperactive)
2. Inattentive
3. Combined

ADHD can have a huge impact on not only the child’s life but also that of the family. Both our son and us as a family have been ostracised by others as no-one wanted to understand or get to know us. Our son is currently 9, and can hold his own in a conversation and has a firm comprehension of things around him and subjects. On paper however, he is functioning at the level of about a 6 year old with reading, writing and maths as he struggles to concentrate long enough to learn. He is an intelligent little boy but sadly he needs someone to continually bring him back to focus and the lack of resources and the lack of recognition of ADHD as a disability means he gets little support.

Symptoms can be difficult to recognise as ADHD often overlaps with other conditions such as conduct disorder, obsessive disorders, anxiety, dyspraxia and autism – which also affects our son. Social interaction and ability to maintain friends can be impaired.

ADHD is hard for any family to live with and a greater understanding and recognition of the condition would go a long way to improve the lives of anyone affected by it.

I also wanted to add a huge thank to ARLEE BIRD who started this blogging challenge and allowed do many of us to connect so THANK YOU!

What I have written here are my views and my experiences and understanding as a parent, although I do not deny having read many books, magazine articles and trawled the internet gathering information over the years.