Dear Parent

The last couple of weeks have been pretty rough for us all, well really for C but as always we have just gone along for the ride.  Starting the new school year has been tricky for both C and myself.  The move to a bigger class, a new classroom and a new teacher has been really hard.  It has been horrid for me to watch him struggle and suffer and as always never really knowing what I can do, to make it that bit easier for him.

As I have said before, I worry a lot about him being at school.  I find it extremely hard to let him go, knowing that I am not there to protect him from everything.  I have to trust the staff to do all this for me.  But I also worry so much about him being judged by others.  How much do people really understand?  Do his class mates get cross at him because he can’t sit still?  Do they get annoyed that he has zero volume control?  Do they get upset when he pushes them in the queue?  And my worst fear; is he getting left on his own at playtime as no one want to play with a little boy who can be so demanding and bossy!  Do the children all go home and complain about him to their parents?  And, if so what do they say?  I’d really hope they try and explain why he does these things and that he doesn’t mean to.  But do they actually understand themselves?  Are they in a place to explain?

All parents of autistic children want understanding and acceptance but for this to happen we first surely need others to have the knowledge about autism.  I have never told anyone at school that C is autistic and school can’t say anything.  So how can I expect them not to think C is just naughty?  One the main reasons for writing my blog was to try and get others to understand a little more about autism.  If people don’t explain about it, how can we ever expect people who have never lived with it, to get it?

So after being inspired by another mother the other day I thought I would write a letter to all parents at C’s school to try and help them understand and hopefully put them in a better position to explain to their children a little more about ASD.  Whether I actually ever have the courage to hand it out is another matter but here it is….

Dear parent

My name is Lottie and I am the proud mummy of two little mini-beasts C & G.  I realize that this isn’t the normal things that mums do, but I just wanted to write a short letter to everyone in the school to try and explain a little about autism because C is autistic.  Some of you many already know lots and others may know very little.  Before I go on, please don’t think I am being patronizing or condescending to any one of you!!

Autism is one of the top hidden disabilities and therefore can be very hard to spot.  People who have it look completely ‘normal’!  You will have all heard about it but most of you will not have been directly affected by it.

Every parent wants their child to be accepted by their class mates.  They want their child to enjoy school and make friends.  They want their child to be happy!  As a mother one of my biggest fears is that C ends up hating school.  One in 5 children who are autistic ends up getting home schooled because they cannot cope with the school environment.  I think this is extremely sad because school can be a super place, but I can also see how it happens.  There is a scarily high rate of bullying of autistic children.  This I am sure is mainly because other children don’t understand why said child behaves how they do.  Again I really can see how easily this can happen.  And I think this is why I have taken this step and written this letter.  No one can understand, and they shouldn’t be expected to get it, if they don’t have the knowledge about something in the first place.  One of the things most autistic people and parents of autistic children bang on about all the time is acceptance.  But it occurred to me the other night that how can we expect this if people, for 1. don’t know and 2. don’t understand.

Children who are autistic want to join in, they want to play, they want to learn.  But they just need a little bit more help and support.  Many autistic children have sensory issues which means they can seem rough during play, pushy in the lunch queue, they can be massively affected by big spaces, loud noises, bright lights and they can have no volume control so seem to shout.  They can have extremely high anxiety levels which means they need to be in control the whole time, which pretty much always comes across as extremely bossy and demanding.  They are very visual learners, so they often need to see something before they understand.  But because they are so visual, their brains are taking in so much information they can very easily become overloaded.  Their language skills can often seem very advanced but actually they cannot process lots of information at once, which means they need things explaining in as few words as possible.  Because it takes time to process, they can seem rude or as if they are not listening; count to 15 before you repeat.  Change can be extremely hard.  They need a fixed routine.  They need a lot of warning before something happens.  Transitioning between one activity to another can be super tricky.

When children get overloaded they very often have meltdowns.  These can seem like tantrums from the outside but are anything but.  Its when they have become so overloaded by what is going on around them they cannot cope anymore  They need to be seen and handled as a panic attack and not a stroppy child who has not got their own way.  As a parent I find these extremely hard as they are uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me.  Never-mind the fact that if they happen out in public you are judged and thought of as a bad parent.

C is just like any other 5 year old.  He so wants his friends around to play, he wants to go around to other peoples houses and play.  He wants to go to the park, he wants to go to birthday parties.  He wants the same as all children.  But these simple activities can have a massive impact on him and us as a family.  For example, to go to a birthday party can take a whole week of preparation.  He needs to know who will be there, where it will be, what will happen.  And then once we arrive it can take him ages to find the courage to walk in.  The noise can be completely overwhelming.  The excitement can be uncontrollable.  He can manage about an hour before he stops listening to me, starts running around at 100mph, goes bright red and starts to sweat.  Now its time to leave and get home, asap.  He is now showing all the signs he is seriously overloaded; a meltdown is brewing.  But by this point he can be too close to the meltdown for me to be able to get him to leave without pushing him over the edge.  The line is so fine.  Because he is only 5, he is still too young to fully read the signs himself so as a parent I need to do this for him. I also need to help him learn how to manage himself.  When it is time to leave?  When it is time to go and quite literally sit in a dark room?

He is already beginning to feel these signs but is still too young to get it, so he doesn’t react in the safest possible way.  A lot of autistic children are runners, and added to the fact that many also have no sense of danger it can be a pretty stressful mix.  When things get to much he can quite often just take off.  This is why if I am talking to you in the playground and seem I am only half listening, its because I am watching the classroom door.  I may seem crazy and rude but if I don’t grab C as he comes out of the classroom, he will be off.  Most of the time he will go back to the car and get in it, but if he is already zoned out, he will just run straight past.  Cars and roads will not stop him!

So please don’t think C is bad, naughty or rude.  I don’t want you to think I am after people to ask C over to play, or expect him to be asked to every party.  I would love to have his friends over to play and give him birthday partied but right now, I am honestly not sure he or I could handle it.  He is doing really well at school and that has a lot to do with the super staff and lovely children.  I am not ever after sympathy for either him or me, only ever understanding!

Thank you for taking the time to read this from a proud but as ever worried mother.

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19 thoughts on “Dear Parent

  1. Wow…you’ve inspired me to write such a letter to my 10 year old daughters school. It’s wonderful to hear that us moms aren’t alone with our special children in this journey of life. Thanks!

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  2. This is informative and inspiring, from a mum who does not have an autistic child but knows people who do, this has helped me to understand how to educate my children in understanding their friends. I’ve read books but still have very limited understanding. This letter is simple but effective.
    If you do send it to the parents most will appreciate your efforts unfortunately others will not.
    I wish you and your family all the best xx

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    1. Thanks Jodie. I really do feel that most people want to understand, but there is very little info out there. And I also believe without info you can’t expect understanding. I’d agree with you that most parents will be happy with it but also some who certainly won’t. Being a mum is so hard whether children have additional needs or not, you still just want the best for them. Thanks again for the message. Means a lot x

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  3. Thank you so much for this letter!! I have written the same letter in my head a thousand times. It’s just nice to know that I’m not alone.
    Thank you
    Jen Smith

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  4. thanks for the post, it’s really helpful. I think it’s best for all to be informed as then people can understand. Those that act negatively and don’t support you aren’t people that are important to you in life anyway, it’s better to work this out sooner rather than later. (This applies to all parents really). Good luck. X x

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  5. I have a 5 yr old grandson who is non verbal autistic. He’s a runner. It’s sad to see him play by himself. He has trouble with texture. We call him our nudist ,vegetarian. I’ve seen and helped with meltdowns. What hurts the worst is when he hurts himself. We’ve seen people look at us in stores when he has a meltdown. All I can say is keep being his advocate and keep him safe. From others and himself. Best wishes to C and all of your family.

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    1. I often worry about C playing on his own. But we do all need to remember that sometimes they need to play on their own. They need the space and calm, as well as allowing them to disappear into their own world. C spends a lot of time in his world; I really thinks it helps him to regulate himself (if that makes sense).
      Kathy I often feel heartbroken about things as well. And so often during a meltdown as I just wish I could have done something to help him not get to that point. But we are learning together and I just have to tell myself that I will always be there and C has family around him that love him and will always watch out for him.
      You sound a super granny. I would be lost without the endless support of my parents. You being there does more than you could ever know!! x

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  6. My husband would speak to my son’s class at the beginning of the school year about autism and then he and my son, who is autistic, would answer questions the students would have. They did this for grades 4-6.

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    1. Esther what a super idea! I am sure its the key to happier children. If the kids around them understand they then pass their knowledge and understanding onto others around them!

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  7. Thank you so much for sharing this. I find it really hard to explain to others too and this sums up exactly what life is like for my son and myself too. It is a daily challenge and most times heart breaking having to send my son to school knowing that he will come home telling me he has had a bad day again with nobody to play with or has been put out in the corridor again to think about his bad behavior. It makes it really hard to go to work most days. I just feel like i want to be there to protect him.
    Once again thank you so much for writing this letter. Understanding and knowledge are so important.

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    1. Thank you! I can see why you are worried! Do the staff have any understanding about what your son goes through? I would be pretty cross if C kept being put in the corridor to think about his behavior. Their behavior is normally a result of being overloaded!
      Is there a safe place he can take himself off for 5 minutes chill time a couple of times a day? I have often heard of children in school having 2-4 cards, each card gives them 5/10 minutes time out. They can use them during the day so they can try and regulate themselves better. If they start becoming overwhelmed they can use their card. C isn’t old enough yet so it does depend on their age BUT there is also no reason why the teacher should be able to see the warning signs and give them a card. Good luck with everything!! x

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  8. i have a 2 yr old autistic son as well that i am debating on whether to send to school or not for these very same reasons. children these days in the school system dont take to kindly to handicapped and disabled children and i hate this they are rude and unkind and they get it from nowhere else but their own home raising how they see their parents bully others or how their guardians bully them so who do we blame i dont know what else to do but time is almost runnin out for me and i just hope and pray that i make the right decisions for not my sake but for his

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    1. You are his mum, and you know him better than everyone. Do what you think feels right and you wont go wrong. However I can see why you are struggling to decide what is right. Maybe give school ago and see what happens. As hard as it is at times for me to send C off every morning, at the moment I know its right for him and me. He is doing well at school, but it is small and so far so good on the staff. But it is always at the back of my mind that if things get to much I will pull him out; even if it means I loose the break I get from him. I realize that sounds dreadful but I need my space from him so I can be a better mummy when he is at home. Follow your gut but do talk to the school and make sure you talk to the SENCO as well so you get a real picture of the school. C is in a small rural school which suits him. If he was in a big school, he would not be coping at all. Good luck, and you will make the right decision x

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  9. Such a good idea, my 4 year old son has ASD. I get frustrated as a parent when people are quick to judge and have had some awful experiences where people just can’t understand but still say things that I have had to bite my tongue over, I’m not really a confrontational person so I beat myself up when I haven’t stood up to some family members/people in the past when they say something so wrong about my son or directly to him, but as you say they don’t have the knowledge and I shouldn’t assume they know. It is heart breaking when you have the knowledge as a parent about autism, you become an expert, when you hear what your child’s daily struggles are you just want to protect them and make their day a little easier where possible. I think it should be standard in school to educate children and parents about ASD as it is so common, people only know about it if their child has it. ASD is a hidden disability, and children/adults with it still look the same as everyone else so people just assume they are behaving badly, when actually they are having a meltdown and need a lot of time, love and support x

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