Our Neurodiverse Family

22/07/2022

These are things that make such a difference

09/04/2022

I understand why some people think this. But it’s just not that simple.

INSULT NO.5 of our month long insult series is:

"Trust me, they would eat if they were hungry"

This is and can be actually quite damaging for our restrictive eaters. There are many reasons why a child can't (notice I said "can't" not "won't" here) and those reasons are usually unknown to the parent/carer and takes a whole lot of detective work to figure out why. It could be sensory related, an aversion to the taste, smell, feel, look and appearance of some food. It could be they rely on familiarity. A certain look, or brand of chicken nuggets or a specific drink.

I think of GrumpyDad and his situation here where his kid will only drink a certain brand of juice which is being discontinued and where they are struggling to find supply of this juice. Ben would and has stopped drinking for certain periods due to his restrictive intake of this juice. Ben has also previously been hospitalised and this statement can have a really dangerous outcome for those who take this advice as fact and who do not know any better.

Before we comment or advise on particular topics, differences, situations, we must stop and think about the repercussions that our advice may have on a particular child/adult with a different neurology.

⭕️It really isn't always this simple. Don't make this judgment until you know ALL the facts!

02/04/2022

Understanding what’s behind these symbols.
Some people don’t know that the puzzle piece is offensive to much of the autistic community and try to use it as support.

02/04/2022

🌎 🧡

24/02/2022

A wee tear reading this ….

03/01/2022

👍

16/12/2021

Having watched the recent show by the McGunness family I had mixed emotions.

On one hand I am delighted that they are opening up as that is the only way to reply drive for acceptance.

On the other hand I felt that this was still from an ableist perspective.

Let me explain.

For me, to gain insight into something you listen to the people who have lived experience. In this case, for me that is autistic people.
As a society we ignore their voice and their experience and talk to professionals who have studied it instead.

I am not trying to diss professionals who do an amazing job. But it is different. And a different perspective.

To really try to understand something it’s Important to not only listen to professionals, but to people with lived experience too. And to marginalise their experience as not as valid is an ableist attitude.

In this case think were missed opportunities to show that.

I found it at times patronising too. But I do understand the fear around your children having a diagnosis you don’t understand. And the fear that brings for a whole host of reasons. From that point of view there were things I could relate to.

If only society could see that autism is a different way of experiencing the world and stop seeing it as “less than” a Nero Typical person.

This article explains much better than I can.

https://autistic-village.com/2021/12/15/autism-and-our-family-a-review/?fbclid=IwAR09yymxNgR1UCwFkErtR5dC2pVHWQxORR_rAmCuQZzfCU7cdXI1U1ju1Nw

A review of the BBC documentary – Autism and Our Family

28/08/2021

We need to be involved from top to bottom, if change is going to happen

20/08/2021

“Be a rainbow” 🌈

The rainbow is a spectrum, human kind is equally a spectrum. A spectrum of colour, neurology, language, culture, gender, sexual preference, ideas and belief. But look at this rainbow, I don't see any fighting. Be a rainbow, and accept people for being different.

26/06/2021

Hair cutting is a total nightmare. I now do it when he’s sleeping, in the dark whilst trying not to disturb him.
Have tried all sorts and it’s all too traumatic any other way. What I wouldn’t give to have this woman 😂

14/04/2021

More this this man please .....

24/03/2021

Why Is It Not His Right Too?

I am not autistic, but I have children who are. They see the world in a different way than I do. I do believe they see the world in a different way than each other too.
Its not always been easy for me to understand. I didn’t realise … but I thought everyone experienced the same world. It turns out that’s just not true. My children have opened my eyes to a whole new world. A colourful world, full of intricate detail and laughter if you stop long enough to see and hear and experience it.
But I worry this world doesn’t see them. Not really. Not the way it sees me.
When I was growing up I remember the phrase “the world would be a boring place if we were all the same”. But the harsh reality I see now is that our world is designed for the majority rule, and we just don’t respect the colour of diversity and difference.
If you don’t fit the same typical mould then it is difficult. It is difficult to get around. It is difficult to be heard. Its difficult to be understood.
Right now I am fighting for my childs right to an education he can understand and connect with. An appropriate education for him which will help him grow. Is that too much to ask? Its not too much to ask if you are the parent of a typical child. In fact it’s not questioned. The majority have a recognised right to an appropriate education. So why does that suddenly change, and its no longer viewed as your ”right” just because your experience of the world is different?
I made a commitment to share the challenges in the hope of spreading awareness and acceptance. So here it is.
I hear myself saying “he has no words and doesn’t understand any verbal communication” to explain that as a result he cannot access education the same way that you and I do. Does that mean he has no right to Education? No – It just means his Education needs it to be different than the one you and I started with. If he was unable to access an education because he was in a wheelchair, changes would rightly be made so that he could access. So why do we not have the same open mind when it comes to neurodiversity? Why do I have to fight for something as if he no longer has the same rights as I do?
If we don’t address the gaps in the systems in our society then people like my son simply get abandoned and written off, as if they are not worth the effort. Is that the same ethos I heard when I was little and told “the world would be a boring place if we were all the same”? I don’t think it is.
Right now the system is letting my son down. But there are a few outstanding individuals who are trying to help that situation. I am more grateful to those people than they will ever know. Its just a shame it has to come down to a few good hearted people and that the system doesn’t see and respect my son the same way it did me.

22/03/2021

I just love this

Credit* la vida con rocco y dominic
https://www.facebook.com/lavidaconroccoydominic

22/03/2021

There might be no words spoken between us, but there is lots of love and other ways we communicate.

25/02/2021

This mum has done so much to help raise awareness of the differences in raising a child with autism.

This is the very first video I remember seeing her in and it hit me like a bus.

I watched it again today as I try to fight again for my sons basic rights to a suitable education. And kinda wish the rest of the world could also have this “switch” do I wouldn’t need to keep reminding the world that he needs help sometimes. And by not giving him access to the right education and giving him that help makes me terrified again as his mum that is not going to be ok.

https://youtu.be/uCZmSEOynVo

There is a ‘last time’ that only parents of special needs kiddos know about. And it is heartbreaking. For years I kept telling myself this was going to be fi...

21/02/2021

It’s hard to imagine when you are neurotypical. Our society now, they way our systems are designed (like school and work) and what we have developed to be “normal” social behaviour, actively excludes anyone who doesn’t fit that average 80%

17/02/2021

I have changed the name of this group to our Neurodiverse family.

It feels like that fits who we are better, and I hope it is welcoming to others in the same way.

As a family unit of 4, some of us are neurotypical, some are autistic and one is as yet nonverbal.

We learn about each other and from each other all the time. Life long learners.

We obviously have challenges (and I am sure some will be shared here) but we also have love and laughter. Lots of it.

The Covid pandemic has been a very very difficult time for us as it has for so many people. I have not shared so much about it. To be honest I was just trying to survive it and keep us all as happy and healthy as I could.

Now we need to try once again to transition again back into another form of "normal" life.

I hope you like the new name and it feels welcoming. That is my intention. ❤️

14/12/2020

Love this. Please share x

03/12/2020

How amazing is this .........

31/10/2020

Halloween


12/10/2020

A great short video explaining reality behind the myths about being autistic. 💙

24/08/2020

This will have a knock on effect for some kids. Not least of all those with autism.

https://www.bbc.com/news/uk-scotland-53888479

Ministers are consulting on the use of face coverings in corridors and communal areas in Scotland's secondaries.

12/08/2020

There are some amazing people in the world.

with
・・・
Drop a ❤️ for this teacher .
Her story was published in the daily mail. Her name is Nay an elementary school teacher in Alpaseo el, Guanajuato .

———————————————————
***This post was sent to my attention by one of our beloved followers.
Isn’t this just so very heartwarming dear ?
We need more of this type of good news! 😊



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09/08/2020

Lockdown Positives - Paced Mornings

I have been considering the positive things lockdown summer of 2020 has added to my life. There are a few. But the first one I am going to talk about is being able to live the start of the day at the kids pace.

No rush to make everything ready and get some if us all out the house set up for the day. With meltdowns and sometimes confusion thrown in. Me trying to keep to routine no matter what life throws at us and have the sandwiches cut the right way. (You have no idea how important that is). Instead I have been truly present with them. Noticing what the want and need and sometimes learning more about them.

I know that the other side to this coin is preparing for school and nursery and all that brings. It’s tough for anyone going back to work or school after this time. But when you have autism this is compounded. It’s going to be extra tough to transition but we always get there. We have the support of brilliant people at school and we have inner strength and resilience.

In the meantime I am going to enjoy these paced mornings. Where the kids can wander about in the garden in jammies and I can properly be present with them. ❤️

07/08/2020

For my fellow autism mums ###

Children in Scotland will begin returning to school next week. This can be a stressful time for families, particularly so during the pandemic as there may be different practices in place at your child’s school. School life might not look the same as it did before and the thought of returning to school may evoke a mixture of emotions in you and your child, these are all normal. To help families prepare NHS Education for Scotland (NES) has released a resource pack for parents of neurodiverse children.

You can read the resource here: https://bit.ly/EdResPC and don’t forget our Autism Support Team are here if you would like advice. Please get in touch at [email protected] call 01259 222022 or speak with an advisor via LiveChat on our website (www.scottishautism.org). The Advice Line is open Monday 10am- 4pm, Tuesday 10am – 7pm and Wednesday – Friday 10am – 4pm.

14/07/2020

For everyone with autism or who have children with autism in Scotland 💙

It is mandatory to wear face coverings in shops and on public transport in Scotland. However, disabled people (including autistic people) who find it too distressing do not need to wear one. You can download our Autism Alert card which you can show in shops if you need. It has been approved by both the Scottish Government and Police Scotland. Download here: https://www.autism.org.uk/services/helplines/coronavirus/resources/how-nas-can-help.aspx

12/07/2020

It’s haircut night .... well the half he’s not sleeping on anyway .....

11/07/2020

These might not be as widely recognised as the hidden disabilities ones, as these are for autism specifically. But I would say worthwhile having right now. 💙

Stop, think autism.
Remember, that not everyone can wear a face mask. The Scottish Government have outlined exemptions for the wearing of face coverings in public. Please be respectful if you notice someone not wearing a face covering in public.
Visit our website to download our autism alert card and view our resources for Autistic People: https://bit.ly/SACovidA & for Parents & Carers: https://bit.ly/SACovid19PC

01/07/2020

This rings true. We are really lucky to have an amazing school for our daughter but are very much struggling when it comes to the right support for our non verbal sons education.

Things like hand washing are a sensory nightmare. All sorts of processes are currently being reviewed but always it seems with only those without special needs in mind. Special needs are in the main being forgotten in this.

Instead why can’t we take the opportunity as we are reviewing how we do things anyway ... to redesign our work around those with other needs included. Wouldn’t that be a great opportunity?

Any businesses or education establishments who would like to consider it ....... there are lots of people experienced in this everyday who would be happy to help. Including me. So just ask. 💙

Families of children with special educational needs tell MPs support "fell off a cliff" in lockdown.

21/06/2020

Happy Fathers Day to all dads and a special shout of to autism dads. 💙

This is the best video I have seen about being an autism dad. I know it’s a bit longer than normal but please take so time to have a watch and understand.

https://dadfilm.com.au/

A documentary following the often unheard stories of fathers with children on the spectrum, DAD shares the experiences of twelve Aussie dads as they navigate the world of parenting and autism.

10/06/2020

🥰

08/06/2020

💙

Reframing : Autism

There are 2 conflicting sides of how I talk about autism.

The first is with medical people, or some parts of education departments, and other supporting professionals. This is clinical and often focused on what autism prevents my kids from doing when compared to a “normal” capability measure or development milestone.

And the other is when I am talking around my kids. And that’s about what they ARE doing, and how amazing they are. Recognising the amazing leaps forward they are making in their own growth.

Recently I am mindful of the effects of both. I understand that the medical world and some other official bodies want to analyse, and be unambiguous. But it does often leave me as a parent feeling cold and always concentrating on what your child CANT do and indirectly (sometimes directly) what you appear to not be able to do as a parent. This can be constant and difficult to endure. But more damaging is the consideration that it could become your focus and that of your child. The constant feeling that your comparison as a person is always focused on what you can’t do.

Simple changes in language can shift or reframe this.

This quote was originally sent to me by my sister. A much more positive way to think and be.

27/05/2020

“Our lives are very different”

Big love to all those parents who’s fight just got that bit tougher.

“Needs must” Takes on a whole new meaning.

https://www.bbc.com/news/education-52806105

Lockdown has left many families with disabled children feeling isolated and without support.

06/05/2020

Such a well written article.

Autism and lockdown.

He is dealing with our new circumstances with courage and humour – and I’ve learned some important lessons along the way

09/04/2020

💙

❌❌❌ COVID19 ❌❌❌
The Government Guidance has been published for leaving the house for medical neeed. It specifically mentions autism.
For more information see the link. 👇🏼
👉🏽 15. Can I exercise more than once a day if I need to due to a significant health condition? “You can leave your home for medical need....”
https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do

Credit: 💙 Sonia Garcia

07/04/2020

This is where we are at as a family right now. Survival mode.

And it’s the case for so many. 💙

https://www.bbc.co.uk/news/av/uk-england-hereford-worcester-52109499/coronavirus-special-needs-parents-in-survival-mode

Tim Clarke, whose daughter Molly has complex needs, describes the impact of lockdown on his family.

03/04/2020

Change of routine .....

Well said ...... 💙

02/04/2020

💙

13/03/2020

12/03/2020

This might be helpful. X

Autism and coronavirus: Advice for parents

Within the autism community we will face some unique challenges from the coronavirus outbreak. Some advise for parents below.

1. State the facts
Only state clear objective facts about the virus. Don't engage or let them hear speculation. They will struggle to separate 'what ifs' from what is really happening.
Try to answer their questions without giving unnecessary details that may alarm them.

2. Food stocking
Do I think we need to be stockpiling food? No. I honestly don't.
However! If you have an autistic child that will only eat specific things I do not think it will hurt to ensure you have a buffer of those foods. Don't assume you can go and get specifically what your child will eat, at short notice.

3. Routine
Schools around the world are starting to close, as well as parents working from home. I would be preparing to change to a school holiday routine at short notice. Explaining it as a bonus school holiday may take it away from being a grey area of no school but it's not a holiday. If you live somewhere this is likely I would consider pre-empting a bonus holiday may be coming (this greatly depends on the child and how they deal with change).

4. Distance
As an adult it is very hard to put distance between what is happening and myself. It's everywhere online. But children can be protected from that a lot more. Try to put some distance in their mind to stop them thinking it is right outside their door. Keep them away from the news if possible.

5. Let them cope
As autistics we are pretty good at finding our own ways to cope. Little man piled pillows outside his door to 'stop the virus'. Will it in anyway help? No. Does it make him feel safe? Yes. Within reason let them cope how they need to.

This is stressful for us all and likely a lot of us are worried. Please remember the fact it is governments deciding, or our own stress, doesn't change that the child is autistic. There is a lot of change. A lot of disruption. They are going to struggle. It being a global virus outbreak doesn't stop their autistic needs.

I hope this has helped even a little bit. Any specific questions send me a message and I will gladly help.

Stay safe everyone.