Dear diary ...

While others are struggling with isolation and desperate to get back to their normal routines – school, work, friends, hobbies – for me and my daughter there is some respite from the daily stresses of life. You see, my daughter is on the autism spectrum. Yes, we are scared, too. With type 1 diabetes, my daughter is vulnerable to Covid-19 and we have isolated ourselves to try and protect her from this devastating disease. And yet … what is her fear during this pandemic? It may be months before she returns, but it is school life that has her devastated and frightened.

The primary school staff have tried to help. They reassure me that things are not as bad as my daughter perceives them. But I don’t believe them, or at least their limited opportunity to witness everything that happens in the school day leaves me unconvinced. I’ve seen the little knocks to self confidence that she receives regularly. Very subtle, but there, nonetheless. The turn of the head in disinterest when she tries to talk to another child. The bumping her out of the way in the morning line up as they try to get close to their friends because they know she’ll never say anything. The turning of their back on her. The deep hurt and beating up she gives herself because she doesn’t get picked at gym. The giggles and whispering she feels in the classroom. She says she is nothing but a shadow. She tells me nobody likes her, worse: they wouldn’t care if she died in front of them. That is how she feels.

What does a parent do when they see their child crying and hating themselves most days? What is the answer? Years have been spent trying to make school manageable for her but the one thing I cannot do as a parent is change how other children behave towards her. This is my heartbreak and frustration. So you see, this time away from school life is respite indeed. My fear, however, is how she copes when she has to go back after having spent months away. For the first time I am seriously considering home schooling. But here is the conundrum; do I remove her from school and risk her feeling more isolated or let the emotional damage continue? Educational damage or emotional damage; not much of a choice.

What I guess I really want to happen is kindness. We are all different and yet we are all the same – we are all just trying to survive and feel loved, valuable. When this battle against a virus that does not discriminate is nearing its end, will we be less discriminating towards each other? That is the never ending fight, and we must never give up.

  • Thanks Pixiefox, Yeah, when my daughter has a bad experience she never forgets it and it's like it happened only yesterday for her when it could have happened years ago. She keeps experiencing those feelings. When she is a bit older she may get good support from this site from those who are empathic towards her.

    She has some amazing talents and so many strong points. It is a pity she doesn't see them herself.

    I must look up Temple Grandin, sounds very uplifting. I am hoping that she will meet some great people as she gets older and learn to surround herself with those who are nice to her. In the meantime I will have to look into homeschooling because I don't see her coping with secondary. I would happily have her live with me as long as she needs in the future. My only concern is what happens when I am not around anymore. One step at a time I guess.

    Thanks, I will :-)

  • Dear Bekind

    I have just seen the latest post from "Autistic and Alone" and I don't want you to be alarmed by it. While they are telling the truth, I feel I must give some balance here as you are probably already very anxious about your daughter. Autistic people have better long term memory and do not have the same attrition of thoughts and feelings that NT people do, so when we think of a bad past event it can make us experience all those bad feelings again, and what has happened is that this poster is actually feeling very strong emotional empathy towards your daughter.

    As I said, I'm a female on the autism spectrum and although I've experienced some brief periods of depression over the years, many non autistic people do too. But I'm actually usually a pretty positive and determined person. I see my Autism as a positive thing - it makes me good at my current job (an accounting role) and it made me good at being a special needs teaching assistant when I was younger, as I was sensitive to the needs of the children I worked with. I think it has also helped me stay married for over 40 years, as my husband is on the spectrum too which makes us on the same "wavelength" .

    I don't know if you have heard of an American Autistic woman called Temple Grandin? She was a very late developer and her father described her as "retarded" and wanted her put in a residential facility. But her mother refused, and like you wouldn't give up. Temple became a distinguished professor of animal science, a consultant to the livestock industry on animal behaviour, and an autism spokesperson. 

    Do ask for help where you can get it, for yourself as well as your daughter, and keep positive Slight smile

  • Maybe discord groups etc, with some occasionally supervision/checking in occasionally and encouraging awareness of online safety of course.

    You may be interested in this.

    https://www.eurogamer.net/articles/2020-03-27-someones-built-the-entire-earth-in-minecraft-to-scale?fbclid=IwAR2KsLqJdIOjM4THXphet9UKQBkJf3rXNU-2TIXazZyhcvfmaqXyEjd7mCo

  • Hiya, she has only one real interest just now and that is Minecraft. I struggle to get her interested in anything else really. She makes up her own stories about what is going on and gets a lot out of it though. She often acts out situations with it as a way of processing how she feels. Would be great if there was a club for it. 

  • Thanks for your reply :-) Yes, she is very good to others when given the chance and she is incredibly sensitive. Thanks for the resources - I'll have a look at them. I have managed to get help through a local charity who are going to match us with other families in our situation which will be great as I find others quite often don't really understand. Thanks for your support x

  • What are her main interests? If there are any clubs related to these she could attend alongside home schooling it would make it easier for her to engage with others.

  • Thanks Pixiefox, I really value your response and it's so helpful. I am starting to feel that home schooling will be the way to offer her that safe environment but at the same time, like you say, I am worried about her social development. I am very worried about her starting secondary school (she is primary 6 just now).

    I'm so sorry to hear about your experiences at school, bullying is such a horrific thing. The school environment is such a challenge and so exhausting for my daughter too. I take her to a small library club but she hates going and won't join in because she is so scared of the way the other kids will react to her. She has made a friend in the last year or two which is just fantastic and I arrange regular play dates for them. When her friend is not around at school she is left wandering around herself. The school have tried to build her confidence in asking others to play with her but they make excuses for her not joining in their games and ignore her.

    I've taken her to different classes and since the age of two she has struggled with them. Difficulty understanding what to do, feeling scared and overcrowded etc. One dance teacher just gave up on her and made no attempt to include her. 

    I'm going to spend some time looking into different options. It may be that home schooling is the best option and keep her going to clubs as well. It is so difficult to know what to do for the best.

    Thank you 

  • I hope things improve for your daughter when school resumes. Take care. 

  • Hi, I have lived through parenting a sweet child like yours and my wonderful son is now 17. You are in a very hard stage and I am afraid that your grief will often be present. We are the front lines and never doubt your intuition about the suffering your child is under. I also feel sad reading your post. I would guess your little girl has amazing sensitivity and is good to others when given the chance. The teachers are trying but do fall short unless they too are a parent for a special needs child.  The way my husband and I survived was messy and who knows how well we did.  We just prioritized his sense of being wanted and valued for how unique he was in the world. We never corrected his speech pattern, we pursued his quirky interests and played alot, smiled when he walked in the room.  Also, when he had an angry tantrum he always ended up in a fitful crying ranting release. Behind his anger was always sadness but we were pulled in by the anger.  I stuck by his ranting and listened to his feelings and repeated what I heard him say over and over this happened.  I was VALIDATING him as a person at every chance.  This is very powerful! Also it is under your control.

    A friend of mine had an autistic child in the same class as my son. My son was not diagnosed until he was 14, by the way.  Her son was often oblivious to how his peers shunned him and had parties where he was uninvited.  This changed much later, but later he also had the ability to learn and act on social learning and his mom was amazing with teenage life lessons.  At 8 years old, your daughter is ultra aware of her peer's behavior which in one way is kinda worse than being oblivious (like my son). More reason for you to be solid and consistent with your love and acceptance.  I must say, I think the classmates are the ones who need adjusting and social skills lessons, not OUR KIDS.  One resource I will encourage is 'social stories' by Carol Grey.  Another is www.socialthinking.com  where their website is chock full of helpful things.  I am also an occupational therapist and these resources are very effective. 

    Remember the power of having one close friend or two.  These times are so tough and the homeschool choice is forced on you right now.  See if it is a good fit.  Maybe other homeschooled kids and families are also a better social scene for your child.  Try to live day to day and come back to this forum and vent all you want.  You sound like a very amazing parent who cares deeply and that is the best parent your daughter can have right now.

  • Thank you so much for your reply and kind words. I do struggle to see her like this, and I wish there was more I could do to help her. I wrote this post after her feeling very upset again this morning and I thought writing down our experiences might be therapeutic. Being able to share online in a safe way feels good as sometimes you don't know how to deal with how you feel. Thank you 

  • I'm an older woman on the autism spectrum, but didn't know this until a few years ago.My school years were pretty miserable overall. Primary was bad enough, dealing with rude, boisterous insensitive fellow pupils (at one point I thought maybe some of them were robots rather than human children, they seemed so insensitive) but secondary school was worse - overcrowded, overwhelming, exhausting and although I made a few friends it didn't stop me being bullied. I would have far rather learned at home in a safe environment. I underperformed in exams as I couldn't take things in very well in a classroom environment but I've done well studying through online and home study based courses as an adult.

    I expect you are concerned about her social development if you home school her, but is there a way you can arrange for her to have "play dates" with selected children? Do you have any friends with children you can meet up with regularly after lockdown is over? Perhaps you could enrol her in a club or out of school class where she would be in a small group, such as judo, dance, crafts, etc? 

    Your daughter is very lucky that you understand her needs so well.I hope you can work out something that makes you both happy.

  • Hello there,

    I feel sad after reading your post. I’m not a parent myself, so I can only try to imagine what that must be like. I’ll let others give you advice, because I don’t feel like I’m in a position to myself, as I haven’t got children. But all I will say is, it’s a horrible thing that people are made to feel upset by others, and I know that it happens at all stages of life, but it must be especially hard to see your daughter getting upset like that. Sorry to hear this Frowning2