Friday, 20 October 2017

An ASD girl

When my son was diagnosed with ASD I decided to do some reading it about it.  I was surprised to feel I was reading more about my husband and daughter than my son.
I didn't know what to do, my daughter seemed ok, she was 11 and about to go to secondary school, how would she cope with the diagnosis process at her age?
I didn't do anything for a year, felt guilty at times that maybe I should but she was coping.  Daughter had a drs appointment for an ear infection, the dr was asking her questions but she was unresponsive. At that point I asked for an ASD assessment- he agreed, no fight, battle or begging.
A few months later daughter had an appointment with the paed, we were both unsure of whether she would be diagnosed.
Two weeks ago she finally had her ADOS and the professionals concluded that she does have ASD.  They took over an hour to pick it all apart and make the decision but they saw it, she's more than just shy and quiet.
She's been discharged from the paeds, they said all support will come from school.  She seems fine at the moment so where do we go from here?  How do we as parents help a teenager with a new diagnosis of ASD when she is so much like us (which is why we didn't see her difficulties)?

Tuesday, 28 March 2017

Are we at our peak?

My sons parent consultations was last week.
He's doing great.  Academically he's really moving forward, he's confident, his reading  moved forward about 2 years in about 2 months, he answers questions in class -correclty!  He has started working independently.   It's all great!
My son is really well supported in primary school, his 1-1, teacher, Senco and support staff are all great with him.
I feel I have to make the most of this time.  He's in yr4, he doesn't have the pressure of SATs year, he doesn't start secondary school for a couple more years.  We've found a good balance, things are working - I feel he's at the peak of his school happiness.

Wednesday, 22 February 2017

Fed up of being obese

I'm fat, really fat - morbidly obese.

At the end of last year I was feeling really unwell, weeks of gastro distress, overwhelming fatigue and no motivation to do anything.  I had some blood tests, I am pre-diabetic and have non-alcoholic liver disease.  I finally reached a point mid Jan when I decided I need to do something about my weight to improve my health.  I owe it to my children to be the best I can.

I started a low carb high fat diet or 'way of eating' mod Jan.  My weight decreased and my energy increased.  I joined a gym too, mainly for the spa initially, but actually I really enjoy doing the exercise.

I've lost 22lbs, I still have many more to go but finally I am on the right track.  I don't know what the future holds for me but I do at least feel I am trying my best to be around for my children as long as possible - I feel that's particularly important for my son.

Thursday, 2 February 2017

School failing on paperwork

In September my 12 year old daughter first saw her paediatrician for concerns about autism.  We were sent questionnaires, the school were sent questionnaires and my daughter had a language assessment.
We saw the paed today for a follow up.  The paed didn't have any paperwork back from the school, the paed needs it to get a clearer picture of my daughter. I feel frustrated with the school for not doing their part to help my daughter, I will call,tomorrow to question what happened.  Today's appointment was not a total waste of time as my daughter will be referred for help with anxiety but it could have been more informative with the information from the school.
Perhaps it was an oversight, perhaps they don't see any problems so feel it's a waste of their time, perhaps they didn't get it or send replies which got lost before getting to the paed.  Whatever the case it's making a long process even longer and more stressful than it needs to be.

Monday, 30 January 2017

EHCP review time

It's time for my sons EHCP to be updated.
I have recieved the draft and it has so many mistakes and omits some of the recommendations made by his speech and language therapist.  The school grades are from 2015.  The cover picture hasn't been updated with the new one I submitted.
I will sort it out.  I thought the difficult process was getting the county council to agree to assess but that's only the first step.  Every year we have to correct the mistakes.
We are lucky that my son has an EHCP so lucky as it seems so hard for children to be given one in my county but still the process every year is draining.  My son is well supported at his primary school  but he's in year 4, secondary school is looming and we need to get everything the primary school do on paper.
One more meeting, one more telephone call and hopefully I can put it out of my mind for another year.

Saturday, 28 January 2017

ADHD mania

When my son was diagnosed we were told he had ADHD with secondary ASD.  The clinical psychologist told me ADHD was causing his ASD traits and with medication his ASD would disappear.  
We tried stimulant medication to see if this was correct and also to aid his concentration at school in the hope of accelerating his learning.
We discovered that my sons ADHD in fact suppresses his ASD.  While medicated he was so sensory adverse, so very anxious, all his senses were heightened.  We tried for about 4 months trying different  meds and doses.  It didn't work.  He couldn't function, his grades didn't improve- yes he could concentrate better but his dyslexia was his biggest barrier here.

Now he isn't medicated, his ADHD sometimes seems noticeable sometimes not.  At the moment he is  manic but happy.  We will consider medication again in the future but for now he copes better when his ADHD distracts his ASD.

Wednesday, 18 January 2017

Me and my mental health

Durng the last couple of years I have suffered from depression.  I've felt low, very tired, apathetic and tearful.  I feel that the whole process of getting help and a diagnosis for my son wore me out emotionally.  I got to a point when I just couldn't do it anymore and almost shut down.  I tried anti depressants one for 6 months another for 12 but they didn't really help that much.
At the moment I feel like I am crawling back out of it, feeling more alive and present.  My diet had got really bad, mainly carbs and sugar.  Last week I cut them out of my diet and it's really helped with my positivity.  I want to leave my depression behind, I feel that's achievable at the moment - at least until my son starts secondary school where I know another battle for help will begin.

Saturday, 14 January 2017

Missing the days before school.

Before my son started school I knew my son was different but I wasn't worried.

My son was a really easy baby.  As a newborn he fed really well, slept 20 out of 24 hours and always seemed content when awake.  Not much changed for a long time.  We got to a stage where he would only go to sleep if I lay down with him but that was ok, wore a bit thin by the time he was 4 1/2 years!
He hit his physical milestones quite early, he was walking at 10 months.   I had no concerns about his motor skills.
He didn't start talking until he had just turned 2 and used only single words until he just turned 3 when he put words together to make sentences.  It didn't matter that his speech was behind as his understanding was there, I knew he would catch up.  He didn't get frustrated with his lack of speech, if he had maybe I would have sought help for him earlier.  His pronouciation was interesting(!), I put that down to being a late talker but it didn't matter as at home we all understood him.
Most of all he was happy, I knew deep down he was different, that something wasn't quite right but as he was happy I put it to the back of my mind.
Once he started school, his differences became very obvious, he started to get very frustrated, he suffered from anxiety.  The fight started to get him help.

I misss the days before he started school.  We were all happy, ingnorant in our little home bubble.  My son is still the same amazing person he was before starting school but I do miss the was he was before he started for both his and my sake.  Life was so much easier then.

Monday, 9 January 2017

Horse riding therapy

My son  started horse riding with the Riding for the disabled (RDA) a few months ago.  He loves it!  He leaves school early one day a week and I take him for his lesson.  There are only three children in his session and multiple helpers.  Sometimes we go for a walk in the woods, other they play games on horseback in a paddock.
We are so lucky to have this opportunity.   I feel it benefits both my son and I.  We both love being around animals.  My sons core strength has already improved, at the start he couldn't sit straight without constant reminder now he barely needs reminding.  I have a chance to speak to other special needs mums.  I hope my son will be able to continue throughout the whole of primary school.
It really is lovely and I am very thankful to the RDA and all its volunteers.

Food, food ,food

My 12 year old has always been a fussy eater.  She breastfed until 2 1/2 years, her diet mainly consisted of milk and petit filous.  Once she stopped breastfeeding she seemed to discover food, trying anything we gave her but nibbling like a mouse.  It didn't take long for the mouse to realise she didn't like much.  She eats Nutella on toast for breakfast, school lunches consist of pasta and sauce, dinner is really difficult at the moment as she doesn't like to eat the same thing twice so doesn't want pasta again.  She goes through stages of loving a particular food, not so long ago chicken nuggets - a guaranteed winner for all three children!  Now she is sick of the sight of them!
My son isn't too fussy, he doesn't eat soups or stews (meals where the food is mixed up).  Other that that he will eat most things, the difficulty is getting him to stay at his plate long enough to actually eat!

School mornings

My sons primary school run a lovely breakfast club every morning.  It's run in the quiet space.  A few children who need a more gentle start to the morning have been invited, they have breakfast, play games, chat and catch up on gossip - they just have a nice start to the day.
This morning as my son was walking into school I handed him his bag, he asked why it was so heavy.  I could have lied but decided to tell the truth.  His PE kit was in his bag!  He was in school before he realised what I had said, he was not happy.  I heard him shouting, then I peeped through the breakfast club window.  I saw him throw his belongings into the cloakroom and then run shouting in the opposite direction.  The TAs in the breakfast club were dealing with it so I left.
I left feeling guilty that he is so upset, that I didn't help.  I left trusting that the staff at his school would deal with it in the calm and kind manner they usually treat him with.

Friday, 6 January 2017

To diagnose or not

I have a 12 year old daughter, I am fairly certain that she is autistic.  She hides it well, in our family it's easy to hide ASD traits as so many of us have them.

A person has ASD whether they are diagnosed or not but still the choice to go through the asses,met process can be a hard one.
With my son it was easy, he was 4 when I realised he was different, he was really struggling in school - he needed all the support he could get as did we as a family so getting a diagnosis was an obvious choice.
My 12 year old.  I didn't even consider she may have ASD until my son was diagnosed she was just shy, introverted.   The books, articles I read pointed more towards my daughter and husband than they did my son.  I had to decide at 11 if it was fair to put her through the assessment process - what if she isn't autistic and I have made her feel self conscious?  I thought about it for a long while then she had a GP appointment for an unrelated matter.  She struggled  to answer even the simplest questions, grunted her answers , said 'I don't know'.   I mentioned my concerns regarding ASD, he said he would refer her - there was no battle, no trying to convince him to make that first step.
At the moment my daughter has had the first paediatrician  appointment, she agreed there are some concerns, has seen a speech and language therapist who scored her highly on the language tests but stated she had concerns regarding social communication.

I still don't know if I am doing the right thing, but I'll trust my instincts which have proved me right many times.

Thursday, 5 January 2017

Expect the unexpected

Today is the first day of the spring term.  My son knew he had to go back to school, wasn't t too happy about it but who is at this time of year!

I didn't expect a fuss this morning, saw no warning signs it would happen.  He refused to go to school, refused to get out of bed, refused to get dressed.  He did it all in the end still maintaining he wasn't going to school.  Once we got there he refused to walk through the door.  The staff were lovely, the SENCo called his TA and she persuaded him to go in.  I could still hear him shouting that he didn't want to go to school but we made it!
He's only 8 and knows deep down he has to go to school, I suppose he wouldn't get dressed or even leave the house otherwise.  What is it going to be like when he's older and I can't persuade him or he decides he really isn't going to school?  Maybe he will surprise us all and it will never be an issue......(I have to think positively sometimes!)

Wednesday, 4 January 2017


I'm so proud of my children and often talk about them, mostly positive occasionally negatively!
Online however I want to keep their anonymity.  I personally would hate to know there is a blog/information about me online which can be searched for and personally connected to me.
Yes I have Facebook, Instagram, Snapchat but to talk candidly about my children and our experiences surrounding their neurodiversity I feel the only way I can do this is by keeping our identity secret.

Feeling like a fraud

My son is happy, we laugh together frequently.  He has eye contact, he can look deep into our eyes when talking to us.  My son can tell fantastic captivating  stories, he has a great imagination and uses I to make guesses on how things work.  He can cope with starting a new school year, a new term as long as he is prepared.  My son has friends and plays with them, most games are of course Pokemon based but he can play with others, he loves company and is very sociable.  This is what most people see of him.

When I mention he has ASD, ADHD, dyslexia, dyspraxia most people say 'oh, just mildly', 'everybodies a little autistic', 'we are all on the autistic spectrum'.
I want to say no we aren't all on the autistic spectrum, it's not a spectrum of neurotypical to neurodiverse it's an autistic spectrum.   If you are on it you meet the criteria for diagnosis, you have all the impairments needed for diagnosis, you have a life long disability.  

I don't actually say anything, I don't have the emotional energy.  I feel like a fraud, outwardly my son doesn't seem autistic to many just quirky and young for his age.  I also feel like a fraud for not voicing my opinion and explaining how strict the criteria for diagnosis is.  Yes, of source many people may have traits of ASD but that doesn't put them on the spectrum.