The worst things to say to an autism parent

Here are a few things that I think people say to autism parents to try and help them feel better, but they are actually really unhelpful. They are all things I've experienced and I'm sure are common among special needs parents:

- They seem fine to me

- My child does that too

- Boys always develop slower than girls

- It's completely normal behaviour

- I never see them doing that

- My kids all went through that

Why are these (and similar) comments unhelpful?

It's because it belittles what the parent is saying and creates doubt in their mind, that everything they are experiencing with their special needs child, is just in their head, when in actual fact, it's not. Remember, it is only the parent who sees the complete picture, the people who see the family once or twice a week are only seeing a tiny piece of the picture. You might think you're being helpful when you make comments like this, but you're not. It never helps a special needs parent to be told their child is just like everyone else, it makes them feel useless as a parent - I know, I've been there!

Instead, try to be sympathetic to their feelings, listen to them, and make helpful suggestions, such as "If you have any concerns, you could talk to your GP". This will be a much more positive step and will actually help them feel that they aren't alone, (or crazy!).

Hello again!

 It's been so long! I can't believe I haven't blogged here since 2018 (although I did create a totally different blog to document our pandemic experience). So much has happened, including the worldwide Covid pandemic and our family relocation to Cumbria, and as usual, life is busy, but I'll try to add content here when I can, and will definitely try not to leave it quite so long next time! Sorry!

The big mobile phone debate!

I know this is a hot topic for parents new to secondary school so I thought I'd cover it here. These are just my thoughts...

Does my child need a mobile phone for secondary school?
The simple answer is no.

Would a mobile phone be useful for secondary school?
Probably, yes.

No child needs a mobile phone for secondary school. I know this for two reasons. Firstly, we never had mobile phones and secondly, our son (Sam) has managed 4 years of secondary school without a mobile phone - and he's fine!
There's no reason that this generation of children need to contact people more urgently than any other previous generation, they just feel like they do because everything now is so instant. We bought Sam a basic mobile phone before starting secondary school but he's never taken it. He's too worried it will make a noise in class and he'll be told off. So the mobile phone sits as home every day and this has actually never caused a problem. He walks to school and walks home and he's never needed to contact us during the school day - just as schooling was in our day, and in fact at all other times in the past. Having said this, I do appreciate that some children may feel safer with a mobile phone, especially if going to school involves public transport. We chose to send Sam to a school within walking distance of home to reduce the potential problems that incorporating public transport into the school day could bring. Children may feel more secure knowing they have a quick easy way of contacting parents, especially if the bus doesn't turn up and they're stuck. If this is the case, my suggestion would be to go for an inexpensive phone that is less likely to be stolen. It also means it won't cost the earth to replace of it gets lost - as lots of things at secondary school do! The other thing to take into account with mobile phones is social media. Thankfully Sam isn't into social media at all (and his phone is so basic it only calls and texts!) so we haven't had any issues around this but it concerns me that so many children, who are often too young for social media sites, are signing up to them. With this comes the potential for bullying and (very alarmingly) grooming. If you are going to let your child have a mobile phone which can be used for social media, make sure they aren't signing up to sites they're too young to have an account with, and I'd recommend ensuring you have access to their phone regularly so you can check they aren't in danger.

In summary, a mobile phone is not essential but can at times be useful. It's up to you if you choose to buy your child a mobile phone but if you do, I'd suggest keeping it cheap and cheerful so it's easily replaced if it goes missing and so it's less likely to appeal to would be thieves.

Knowing the secondary school policies

This post might sound a bit dull but it can be an extremely useful thing to know. When I was a school governor, part of my role was to read through and update or suggest amendments to school policies. By law, schools have to have policies on various aspects of school life, and they have to be accessible (usually through a website) to anyone who wants to view them.

Policies are put in place to help staff, pupils, parents and school governors. They layout what the school will and won't do in particular circumstances. One of these policies is a Special Educational Needs (SEN) Policy and all schools should have one. Although you don't need to know the policy inside out, it can be a very useful point of reference if you or your child has a problem with school. The policy will outline the school's roles and responsibilities so you can clearly see where they stand. Don't be afraid to use these policies when you need to. If you feel your child is not receiving the care they should be, as detailed in the policy, then contact the school about it and quote their policy to them. Special needs children should be able to access the same education as everyone else and you can hold to school to account if they aren't able to.

I recently had a situation where my son was given a lower than expected mark with regard to one of his subject areas. I knew for a fact that the issue wasn't with the work or subject, but was in fact with the teacher. The teacher caused my son to be so stressed every lesson that he couldn't concentrate on the work he was meant to be doing. I had lots of contact with this teacher but she just didn't understand how to deal with him. I knew the lower grade wasn't down to his ability to work, it was down to the teacher. In this case I was able to check the SEN Policy and quote exactly what it said about him having the same access to education as his peers (including which part of the policy it was in). The school then had to sort out the teacher error, as she had effectively marked him down because she hadn't understood how to accommodate his special needs, in the way the policy stated she would.

There are policies on various aspects of school so if you're having problems in any area, I'd highly recommend looking at the policies first to see where you (and the school) stand. Don't be afraid to challenge decisions you feel are wrong and use the policies when you need to - that's what they are there for.

Knowing the secondary school Senco

The Senco is the Special Educational Needs Coordinator of a school. They coordinate TAs and support for pupils with a Statement or ECHP (Education and Health Care Plan). The Senco will also make teachers aware of special needs pupils within their classes and is responsible for sorting out Statements and EHCPs.

Having a good relationship with the Senco is essential. Remember they are there to help you and your child as well as the TAs and teachers. You will see the Senco when your child has their annual review, which is when you have a meeting to review the Statement or EHCP to check everything is up to date and still applicable. This is also when any amendments or changes would be made. However, I would also recommend meeting the Senco when possible in addition to the annual review and ensure you keep in close contact regarding any issues or stresses your child is facing.

Even with a Statement or EHCP in place, it can feel like some school staff don't understand all the needs of your child. The Senco can help by informing or reminding staff of specific issues or triggers your child faces so that lessons go as smoothly as possible. As I said in a previous post, at our school it's possible to email staff with any queries. This is a wonderful tool and I recommend using it (if you have access) whenever you need to, to get a message to the Senco. A quick email first thing in the morning can ensure a massive stress for your child is sorted out before they even reach school. If you don't have this particular method of communication, then phone the school or Senco when you need to, so that messages get through to the right person.

A good Senco will be happy for your input and will appreciate all you do to get your child to school - especially on those really stressful mornings when everything is crazy and nobody's had any sleep! A good relationship with the Senco will help all of you incredibly as you'll be working together as a team rather than feeling like you're going into battle with school.

Knowing the secondary school teachers

I was planning to write one post on secondary school but there is so much to cover that I've decided to write a few separate posts on different topics so you have more chance of getting to the end of the posts! The first is on knowing school staff.

It might seem obvious, but get to know school staff as well as you can. In Primary school this is fairly easy as staff are usually fairly accessible and there are lots of opportunities to help out with reading or on school trips. However, once your child moves to Secondary school, the opportunites to help disappear. School feels much more distant because there’s no taking your child to the school gate and chatting with other parents or teachers. You really only see staff or other parents on parents evenings or whole school events. This is why it’s best to find out all you can about the staff responsible for your child. The Senco may be able to help with this or if not, another member of the Senior Leadership Team should be able to provide details. Go to parents evenings to meet the teachers your child has. Talk to them and get a feel for what they are like as well as using the time to talk through any specific issues your child has with the lesson.

This may vary school to school but at our secondary school it’s possible to email any member of staff using the same email formula. This is brilliant as it means all staff can be emailed directly. Additionally, if emails or messages don’t get through, the Senco is happy to forward or chase up messages for us.

It's also good to give staff as much information as possible about your child so they know what to expect. Although the Senco will have given all staff information specific to your child, some teachers seem to respond more to information directly from a parent because it is more memorable. Email (if you have this facility) when you can/need to. If there's an issue with homework/classwork/seating plans etc, let the teachers know. In my experience they do their best to accommodate where they can and would much rather know about problems before they escalate. Remember, if they don't know there's a problem, they can't help. Be the voice for your child when he/she is unable to voice their own concerns. Don't assume that just because they are secondary school age they can sort themselves out. Children with autism may still need you to be their voice, especially when they're stressed. Always be polite and courteous when contacting teachers. Keeping contact positive will help you, them and your child.

Hug, hug and hug some more!

A very short blog post tonight on hugs(!), but I'll try to post again soon!

Hugs are a great way of relieving stress! I know all children with autism are different, and some don’t like to be touched but if you have a child that can cope with the sense of touch or even enjoys being hugged, then hug them as much as you can. This doesn’t have to stop just because your child reaches the teenage years. Hugs are just as good at relieving teenage stress as they are at relieving younger childrens stress and they’re free too! So hug, hug and hug some more!