Where do I start?
I have been procrastinating on this so long, getting behind the beginning where it all started, though I am not sure if there is a specific point in time and worried I might not remember all I want to say or say it in the right way. So you will see the No.1 up there, with my addled mind I’ve realised that this is going to be a lifelong journey so I might as well make it numerical, so I know where I am along the line for when I look back, which I am sure to do.
So whose journey is this?
It is really my children’s journey, but being their mother it is mine also, a learning curve, full of emotions some good some bad, a sense of morphing and moving with time, trying to now open my eyes and understand what is going on better. It will also become my children’s schools journey too when they start to instigate plans to help, other family members journey and my children’s friends. Basically anyone who is in their life.
So let’s go back a bit
There is a common phrase that no one ever gives a parent a handbook, tells you how it should be. Sure there are suggestions from grandparents, friends etc, but it’s different when you ‘live’ with your children, they don’t see the 24/7 goings on. There is also another saying that if you are used to something and have never known anything different things become ‘normalised’ and you won’t know that what is going on is something that should be looked in to or however it might be politically correct in expression.
I have always known my children to be lively. My eldest used to roar before he spoke, he used to have tantrums, wild ones, but I just used to think the roaring was quite cute, to begin with until it went on for rather a long time. The rages I just thought were toddler tantrums, then little boy tantrums. The running and activity level “oh it’s just boys”, so you sort of take it all in your stride, go with the flow. At nursery, primary school both my children seemed to experience issues with attention, not being able to focus for long and it niggled enough to try some things at home but not anything professional.
My eldest developed tics at around 5/6 years old. I had never come across them before, felt devastated that this had suddenly developed. Why had it developed? Whose fault was it, was it the school? Of course I know better now but at the time I was scared, looking for an ‘opt out’ emotionally, pass the buck even for a few moments. My sons tics would sometimes nearly disappear, there are mild tics that people don’t think of like biting ones nails excessively, whistling constantly, coughing etc. It would be like a radar in the end letting me know “he is really stressed now, he’s not telling me something ” etc etc.
Then there was the energy levels, I went to CHAMS at our local area, we were told “oh it’s ADHD, medicate him” I was very resistant, not convinced and didn’t go back, I found it all very pill pushing with no other offered investigations or solutions. That was with my eldest.
Then my youngest started to show the non attention, excessively fidgetty, shouting, unable to do his phonics, sudden hysterics during homework time, forgetting everything to the point i wanted to sellotape on his clothes and put a trace on his homework.
The situation was beginning to get out of hand and the school were just saying “oh he needs to learn responsibility”, whereas I was saying “no I really think there is a problem here, please could you support us with at least the homework issues, we can suffer the loss of coats, shoes etc though devastatingly expensive, but emotionally getting no homework and a telling off or late homework and trying to cram does not work with our family or son”, because of course they don’t realize the amount of stress or time it takes him to get anything done.
So I hit a brick wall
I don’t know what it was. Maybe it’s a combination of things. I suffer chronic pain and having this and two adorable but lively and sometimes hard to handle children makes it very exahausting and challenging.
My eldest also started secondary school and all of a sudden his tics went off the scale, they were so loud it would physically hurt my ears not to mention it would give him a headache. Then there were the unexplained rages the instant he got home and depression. It was as if a stopper had been taken out releasing some kind of pressure and it was directed at me. I was confused, upset, I was obviously never responding in the right way because it was simply a case of what he needed to do and I had yet to understand all of this.
Then with my youngest the activity was becoming increasingly hard, he would never sit down, not even for meal times, up down, up down, running around the kitchen. Then knocking in to people, not hearing me, switching off. Sometimes a sentence could take five minutes or five hours. It was confounding, I tried everything from one end of the scale to the other and I just was hitting a brick wall.
So I decided to get them assessed
My eldest son
- We had been to CHAMS with my eldest, they had said ADHD and pushed for him to be medicated.
- We then stopped going.
- So after his assessment which I paid for privately, we were told that he was most definately NOT suffering from ADHD nor ADD.
- He was however mildly dyslexic, he also suffers from dyspraxia which in his case effects his emotions as well as physically which has a knock on effect with his tics which of course he also suffers from.
- He also suffers from word finding issues, which causes some social stigma and stress for him when he cannot complete a sentence though knows what he wants to say.
- He is incredibly intellectually able especially so in maths.
My youngest son
- We also went to CHAMS with him, only had the first introductory session, were told he had ADHD and should medicate.
- No mention of anything else.
- A wait for months to the next appointment.
So after his private assessment….
- He has severe dyslexia
- He has dyspraxia
- He has auditory processing issues
- He might have ADD/ADHD however the psychologist said that it is preferable for him to have support over his dyslexia and dyspraxia which might actually help him to calm down, rather than medicating.
- I don’t want to medicate him, so will go by this advice.
- I have been told he is superior in intelligence and hence this has masked the dyslexia.
NOW all of a sudden we have been offered a full assessment from the NHS for our youngest. The speech and language therapist has gone in and confirmed his dyspraxia, however nobody seems as far as I can tell, deals with dyslexia. It is like looking for a needle in a haystack on the NHS to get this diagnosed.
My eldest has his appointment with a CHAMS Psychologist to discuss his tics but now we will also need to discuss his dyspraxia.
How do I feel, how do my children feel now?
At first I felt a huge overwhelming sense of sadness and guilt. Not sad because of the results, but because I was beginning to understand how ‘life’ is through my sons eyes and how different it is from the ‘usual’ expectations one thinks it might be. That they have been through this for so long with no support. Though they know no different the fact is that if they had had support things would undoubtedly been alot easier.
I don’t understand everything, it is a huge learning curve, but I see things so differently now and try to approach things differently. I have been completely open and honest with my children and told them the results of their assessments and explained to them the best I can about what it all means and with this the help that they ‘should’ get.
My children have been nothing but incredibly mature, eager to know their results and just easy going with everything that has been going on.
I have felt a bit like it is a tornado of emotions and now knowing where to start to help, trying to learn but at the same time trying to give them support and I will admit I feel frightened at times and lacking in emotional support from those who should be a little crutch for me to lean on at times.
So I shall stop there for now, but I intend to write/talk more about individual experiences, for example my sons tics which has a major impact on his life, my youngests dyslexia. Though dyslexia is quite commonly known it doesn’t seem to be easy to get it diagnosed through the NHS, not everyone can afford private assessments, I am stretching it financially to have done it but it was imperative to find a way.