School report


We got Logan’s school report this week….. no surprises there…. I don’t know how you all feel about school reports. I, frankly, don’t see the point, other than making me feel as a failure of a parent.

Year 4

Logan has attended three different mainstream schools and every school seems to evaluate Logan the same way his school classmates get evaluated. It is not fair on him. Logan is well behind his classmates, though he has done some improvement coming from school number 1 to school number 2 – BUT  there are not tick boxes that will show his progress: that he stopped running away towards the exit, that he learn to sit through assembly and class, that he was able to grab a pen or that he started learning to read memorizing words, that he started talking and playing with other children and most importantly is that he started to learn how to handle his emotions, recognize them, ask for time out of the classroom when he needed a break. He improved so much, we couldn’t believe it.

But then coming from school number 2 to school number 3 I was hoping they will help him with the next step, which we believe is to move from memorizing words to learn to read with phonetics unfortunately this has not happened. And it breaks my heart that he can’t read.

The only thing  it has been noted on his report is that he made an effort in Music. Logan likes to sing and be seen on stage.  Unfortunately, he dislikes the school and teachers so much, he has not really engaged well and that might have well hinder his learning.

Him not ticking all the boxes, it does get me down a bit, seeing that report. I have not mentioned it to him as I think it will just give him anxiety, because we tried to make it clear that school is his “job”, that he is a student and needs to put work and effort in what he does.  

In September he will change schools again, with the main difference being that he is going from a mainstream school to a special school for autistic children and I have so many hopes that it works out well for him. Hoping he will make friends, that he will improve in academics, he will be learning life skills and will be able to finish primary and secondary school. He is a smart, cheeky boy and I believe he can do so much better with the right support.  

Maybe next year’s school report will be a different story.

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BIBS and STAARS

More than 3 years ago I signed Zelena up to be a participant in a study. BIBS (Brain Imaging in Babies study) and STAARS project (Studying Autism and ADHD in at Risk Siblings project). They were searching for babies who were siblings of a child with an autism diagnosis for research purposes. 

zelena
Zelena, aged 6 months


Eager to contribute and help to research this condition we got in touch with them. So far Zelena has done most studies, I couldn’t do the first one, an MRI scan when I was pregnant with her just because I have metal in my body. 
But she has attended to all the scans and studies at the Birkbeck Babylab and at the Institute of Psychiatry, Psychology & Neuroscience .

The study consisted of observations of her playing, interactions with the team, some problem solving games. She had MRI scans, electroencephalogram (EEG), DNA tests, and eye tracking, this last one is done by watching videos.

The BIBS study and the STAARS project

We don’t live locally and sometimes it felt a bit difficult to keep attending (it is 3-4 hours drive from home) but then we reminded ourselves the reason we decided to do this, and we made the time to go. Except for the travelling bit, it has not been hard on Zelena. She has been happy to comply with most tests, all but on this last one at her 3 year old check-up, she refused to do the EEG.  She just didn’t want to wear the helmet. But in the many visits she has done, that was the only time she was unhappy to do something. And I think she was unwilling to do it because she was quite tired.

Zelena having a lunch break between tests, aged 3

It has been a good experience, everyone involved has been very calm and patient with Zelena, and they explained to us every step, every test; we felt confident trusting them. After her first birthday we started noticing that she had changed a bit, up till then, she had been hitting her milestones with no problems. And attending to these visits and seeing her reactions to the games she had to do; it made it obvious to us that she is different and that she might be in the spectrum.

This study and project is on-going, if you would like to take part, you can find them on social media:

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Difficult night

Last night was one of those nights where you feel like throwing your arms in the air and cry and shout “why?” In my case it was: why can’t everyone go to bed happy? This was because Logan, Zelena and even the cat Gertrude were all crying at the same time. Logan who is 9 years old now has no issues sleeping now (a story for another day), the problem was that he was anxious because he had school today. Every Sunday night and Monday morning we have a bit of an argument involving the reasons why he has to go school.

Last night, it was very different because he was very anxious, he was crying, saying that he hates school and that nobody likes him and that he hates to learn. At the same time I have Zelena in her bedroom, I don’t know why all Sunday she was emotional, she is nonverbal, so it might have been out of frustration. But one minute she is playing and then crying for 20 minutes, eventually she is back to her happy self and then again and again in an endless circle of crying for no apparent reason -all day Sunday. And there she was by her gate bawling her eyes out. Again I don’t know why. Then the cat in the background, crying too. Gertrude wants to go out, but she won’t just go out, she has to have milk and then go out. So after my little inside cry… I thought I just have to get on with this. Quickly I gave Zelena a little toy to distract her (which ended up working for 5 mins) and then I went into Logan’s bedroom because he seemed to be very stressed out. We talked, I reassured him that he is loved and that we would do something fun when he is back from school (bribery is one of best tools) and read him a book, gave him his old teddy bear, and left him to sleep. Then ran to the other room where my little madam was back to shedding tears, cuddled her and sat with her on her bed till she calmed down with her tablet watching you tube kids music videos, while I was there I was stroking the cat to keep it quiet, and then I ran downstairs, gave the cat a bowl of milk and opened the door to let her out. I sat down for 2 minutes and literally fell asleep on the chair for about 5 minutes…

I always underestimate the emotional toll of raising children, which is exhausting in itself with neuro-typical children. But if you add the autism factor: when your 3-year-old girl can’t tell you what is wrong, because she doesn’t speak; when your 9-year-old boy tells you that he wishes he didn’t exist because nobody likes him. It is so draining and upsetting. I was thinking maybe I didn’t spend as much time with them on the Sunday, my husband and me were working in the garden a lot to make it safer for them (added a gate and a fence). We were at home but working all day and though they were with us most of the day, the children spent most of the time playing by themselves. So I think maybe when we are doing work in the house, we just need to ensure to have play breaks. I don’t what else I could have done differently to avoid them having such a difficult time.

And Gertrude, well, she is just a spoiled cat…

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Let’s do this.

Hello there,

I have 2 children with autism, my oldest was 5 when he was diagnosed, though we had  the suspicion that something was not quiet right with his development and we were expecting a diagnosis. It did still feel like a cold water bucket thrown at me, I did not talk about it other than to family.

Eventually that circle of people I would talk to grew very very slowly, a couple of friends, then some people at work, I just needed time to assimilate and also he was so little I didn’t anyone looking at him any different.

Last year in July I started an instagram page, mixedautism please follow if you are on the ‘gram. One reason was to connect with other parents, and autistic adults and I felt so comforted and reassured I’m doing what I can. The other reason was because we had a daughter in 2016 and after she turned 1, she started regressing and then we saw those classic signs of autism in her behavior. So I felt, I live in an autistic home I just need to get knee deep into it and just go with it, learn more, read more, for my children. That’s why I got on instagram which I felt it was an easy platform for me to upload and connect with people.

Today I feel I like to write a bit more, and start a blog. So please join our life journey, if you have a blog too, please link it in the comments, and let’s talk, let’s share, let’s not walk this path alone.

Love,

Sol