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

H is for hospitals

Over the early years we got very familiar with a number of hospitals.

My first real experience of being in hospital was when I was admitted at just under 30 weeks pregnant with blood pressure of 128/178 although I had zero symptoms and it was a late routine appointment that spotted it. I was kept in 4 days then sent home. Less than 48 hrs later I was in an emergency situation having had an abruption at home at just under 31 wks & had Little Man by emergency c section - my little 2lb 9 man. Despite this rough start he did very well in PICU & SCBU & was home after 6 weeks.

At 8 weeks old he got RSV, double pneumonia & suspected meningitis. We nearly lost him. The local hospital's SCBU had been closed the previous year so they didn't have small enough needles to get lines in him or to give him oxygen. the doctor who worked on him that night is my hero, he faught to get lines in & despite it being very traumatic & hearing our baby cry properly for the 1st time, he saved him and the young nurse Amy who stood bagging him & giving him cardiac massage until a specialist transfer team arrived from Great Ormond Street who intubated him & put him in a special pod to take him to Great Ormond St intensive care unit.

Next stop was a strangulated hernia at 16 wks old, again an emergency transfer to GOSH for emergency surgery.

Since then he's had 3 more hernia ops at the local hospital.  

First one was aged 4 - he reacted very badly to the anaesthetic. The operating theatres were in a different building to the children's ward and normally patients are taken through the under ground tunnel between buildings. This was closed for building works so we walked the 100 yards. When he came out of theatre we could hear him screaming as we came out of the lifts. We were greeted with him being restrained by not 1 but 2 nurses, who he was trying to kick, bite, thump, head butt anything  really. He was also trying to rip the IV out of his hand. I picked him up & he calmed down dissolving in sobs. He wouldn't go to his dad or on the trolley, he also refused to let me sit in a wheel chair with him, so I carried him. At the doors I turned to walk back to the children's building but was stopped & told we had to be transported in an ambulance right round the one way hospital system. Little Man heard the word ambulance and flipped, I could barely hold him, I was bitten, scratched, hair pulled, all while he was screaming not to make him go in the ambulance. I was physically shoved in. In hind sight I should have just turned & walked but I think I was so focused on not dropping him I couldn't see that. Once out of the ambulance he calmed down. He split his internal stitches with all the stress so a few weeks later the hernia was back.

The next 2 hernia ops were a lot less traumatic and done at the sane time as we knew what to expect and how to prepare him better. He still went a little mad after the anaesthetic but we were there as he woke and they had a sedative ready and waiting!

He is petrified of ambulances and hospitals - I firmly believe he remembers all the interventions in his first 16 weeks.

A-Z Blogging Challenge G is for

G is for Games

Games are very important to my son.

The brain of a child with ADHD is working at a rapid rate, our son describes his brain as whizzing around his head so he can't think straight or concentrate.

We were advised to limit his time on games consoles as these games also move at a very rapid pace and therefore feed the brain of a person with ADHD and do not help them to learn to slow it down.

However, there are literally 100's of games now termed 'brain training' and just doing a basic Internet search and using the search term ADHD and games and brain, will lead to many results, below are just a few that I have come across and reading these makes me wonder how games can be viewed as a bad thing, surely with correct use they could infact be very beneficial and teach some life-long skills. We certainly use games, more as a behavioural thing at the moment, they are important to our son and if he is mis-behaving he knows that he will lose 10 minutes of game time at a go, and as we limit it he understands the consequences.

NASA’s latest software technology transforms ordinary video game play into highly effective treatment for attention deficit, hyperactivity, and autistic spectrum disorders. Programming specific to your child trains flexibility of focus and attention. Enhanced ability to learn occurs naturally while playing favourite video games - XBox, PlayStation, and more, with S.M.A.R.T. BrainGames^TM

http://www.brainhealer.com/programs_smartbrain.html

 

Feel-Better Games

The games, which are available for download or free play online at selfesteemgames.mcgill.ca, rely on similar principles as other games used for AD/HD. With repetitive responses, players develop new connections in the brain that may enhance self-esteem.

http://www.additudemag.com/adhd/article/798.html

 

The ADHD Brain

 

Games are a great way for kids with ADHD to practice following rules,  anticipating results of their actions, and staying on task until completion. Many kids with ADHD enjoy spending time on the computer, consequently computer games can be a fun way to practice skills without feeling like they're spending extra time in therapy. There are multi-user games as well to allow kids to practice sharing and cooperating as well as social skills

 

Playing games on the computer, which can be viewed as a treat rather a chore, can be a great way to include stress-free unstructured activities that still help a child progress with skills they need to manage their disorder.

 

Skills that can help a child with ADHD include:

• Attention
• Impulse Control
• Organizational Skills
• Anger Management
• Social Skills
• Self Esteem
• Cooperation

All of these skills can be practiced with various computer games.

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

Listography 5 that are better than One Direction

I am really excited to discover Kate's listography is still going! I use to participate regularly and loved the different mix of subjects and things to think about, often leading to an afternoon of pure reminiscing.

 My blogging mojo went AWOL recently, leaving home and hiding under a distant bush so I have been away from here for a while, but now the prodigal blogging has returned I am jumping back in with both feet.

This list has been prompted by Kate's 6 year old declaring David Bowie was better than One Direction, while her 8 year old nearly passed out in horror. What have our kids got to look forward to that is better than One Direction?

1. Traveling / backpacking - one of the best things i have ever done. Leaving University half way through my second year due to illness was a huge decision but after a few months back home and getting back to full health, I needed more, so I did what any normal 19 year old would do, jumped on a train without telling anyone, visited an organisation in Manchester, and there And then booked a trip to a kibbutz in Israel leaving 10 days later. I planned to go for 6 weeks, 6 months later I returned a different person having lived and worked the land, driven tractors, tended bananas & avocado, plucked chickens, termed across the Negev desert on camels with the Bedouins, floated on the Dead Sea, swam in the Red Sea, slept on beaches, climbed Masada to see sunrise and floated down the Nile for 3 weeks on £100 taking in the pyramids, Cairo, Luxor, Aswan, etc. I returned and transferred university and had the time of my life, fitting in much more travelling.
2. Falling in love - need I say more
3. First concert - just the thrill of it, the excitement. My first concert was to Dublin to see U2 on their Zooropa tour!
4. Watching your child sleep - even now 9 and 6 years on the thrill and joy I get from standing watching them sleep, the innocence on their faces, mouths slightly parted, cheeks all rosy, and those sleepy cuddles.
5. Leaving home - either to your own place, halls of residence, buying your first place and that feeling of reaching the goal of independence, adulthood, the pride you feel.

When I read Kate's prompt I thought this would be easy, but infact it was really difficult - can you add any, if you can pop over to Kate's blog and add your link x 

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)