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.