I wish I was enough

When I was younger I was always the friend that everybody wanted around. I wasn’t rich or anything like that, but I was reliable and trustworthy so friends I had seemed to like me for that. I was the one they came to with their worries and struggles yet rarely were any of them there with time for me if I needed help. When I no longer had any use for them, I’d be dumped from the social group. It took me years of bad experiences to realise that I wasn’t so much the wanted friend, I was actually the usable friend.

It happened again at University, in certain jobs too so I started to avoid friendship circles as much as possible, deciding that my own company was better than being someones friend with an unknown expiry date attached. I wasn’t enough, I didn’t quite fit.

Even now in adult life, it still happens. I seem to attract a lot of people who need me for a certain time whilst I have a use and then they bugger off! For a very long time I stopped trusting people assuming they’d all treat me the same and that this was the pattern that would always happen, the disposable friend that was never enough to be wanted longer term.  Anxiety plays an extra role in this too, telling me constantly that I’m not worthy of people. Because, well, anxiety is a twat! Even the few friends I have that I have great close relationships with, in the back of my mind I’m always ready for them to stop caring for or needing me. Waiting for the day they decide I’m not enough. Because, after years of feeling like this, I still believe I’m not enough.

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This isn’t a pity party post by the way, it’s the thing I thought of at the last minute to write about for this weeks ‘Finish the sentence Friday’ group hosted by the fabulous Finding Ninee

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A mini interview with Lynn

I ‘met’ Lynn a few years ago on an app called ‘periscope’ where we chatted with friends in a kind of ‘go live’ setting. I love following her journey and Owen is an amazing boy. Together they are one incredible team and they create some incredible art work which I love seeing. Here are Lynn’s answers to my questions:

Tell us a little about yourself

I’m Lynn and I am currently living in West Virginia, USA, with my son, Owen who is seven. After moving to West Virginia I became involved in theatre, and eventually into stand-up comedy. My son and I love to go bowling. And I love donuts.

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What is your connection to autism?

My son, Owen, was diagnosed with autism in March of 2015, near his third birthday. Since then I have been trying to learn how to help and support my son.

What made you start a Facebook page/blog?

I wanted to share our journey about autism with others. I wanted other parents to not feel alone, and for those that had not been around autism, I wanted to share a glimpse into our world to see what it is like. I wanted to show the whole story. My roller coaster of emotions, the highs, the lows, and in-between; all while learning what autism means to my son, and his future. I wanted a place to share our victories, and celebrate other’s victories, as well. Plus, I wanted people to be able to ask me questions about our journey.

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Do you think there is enough support and resources in your area for autistic people and there families?

No! Flat out, NO! I don’t think there is enough support for families anywhere. That’s a broad statement, but I truly believe that so many families are struggling for help, and support. I feel like the support needs to start earlier, and start with the parents, and guardians, and then the children. I felt like not only was I having to recreate the wheel, but I had to find a way to move it along. I think the nice thing about social media is being able to reach out to others that have walk along this path, and they become part of your support system.

What are your thoughts about how autism is portrayed in the media?

I think I block a lot of it out. I try to focus more on the positive stories, and not what the media is really saying.

What three books related to autism would you recommend to people?

That’s a hard one for me to narrow down. I have learned a lot from the author Brenda Smith Myles. Any of her books, I think, will answer a lot of behavioural questions, and help you with solutions, or more of an understanding of autism.

What would you like the world to know about autism?

My son has severe autism, but he is thriving. He is learning to talk, and every day I see growth. I want people to understand that he is accomplishing great things, even though he may struggle to learn some things. It’s not always easy for him, or me, but like I tell him, we are a team, and will get through this together. I always say, “autism wasn’t important to me, until autism was important to me”.

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You can follow Lynn & Owen on Facebook: Sweet Baby O

Lynn’s blog is here: Lynn Browder

A mini interview with Zoe

I can’t remember when I started following Zoe’s incredible Facebook page but Brodie was still in school. I love following Brodie’s adventures, he’s an amazing young man (Harley too, Brodie’s brother) and incredibly lucky to have such a wonderful mum. Here are Zoe’s answers to my questions:

Tell us a little about Brodie

Brodie is a 20-year-old young man, he has his own lawn mowing business and he works two days a week with a support worker, the other 3 days he attends a farm day options programme.  Brodie loves life and has a great sense of adventure, he loves fast rides, fast cars and fast boats.  He can ride a quad bike, motor bike, and loves to go on the jet-ski.  He follows Aussie rules football and is a Port Adelaide supporter.

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What is your connection to autism?

Brodie was diagnosed with Autism at 22 months old, his sibling Harley was diagnosed with Asperger’s when he was 8 years old.

What made you start a Facebook page/blog?

Brodie is a legend and I don’t care if sharing his achievements is ‘inspiration porn’ or not, I think it’s great he can inspire others to live life to fullest they can.

Do you think there is enough support and resources in your area for autistic people and their families?

Over the years it has changed so much, services have grown, but everything is still a fight, you are constantly having to prove your child’s autism like it may have magically disappeared.

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What are your thoughts about how autism is portrayed in the media?

I feel like the Autism community is often fighting within itself over these types of things.   I believe strongly we must listen to Autistic adults, but we must remember that being a parent of a person with Autism is also a role and it in itself has its own story and no it’s not the same narrative as being an Autistic person, but it has a different story and parents should feel OK with sharing that story with respect of course.

What 3 books, related to autism, would you recommend to people?

Gosh I haven’t read any books in ages (who has time) I found the movie “The Black balloon” was representational of our story, it’s also Australian.

What would you like the world to know about autism?

It’s different for everyone and each story/each family situation/each belief system and values is going to change how autism looks for each autistic person and their family and friends and supports.  I can share my story, I can assist Brodie to share his story and help provide a platform for him to do so and assist him with finding his voice, but that’s all. It’s just how it is and how it was for us, we can’t tell others how be autistic, or what autism means to them or how to parent their child with autism.  You need to take it on an individual basis and you have to accept each unique story without judgement.

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You can follow Zoe & Brodie’s Facebook page here:  Forehead kisses – Our Awesome Autism page

Brodie’s business page is here: Mow Your Own Future

A mini interview with Kelly

I ‘met’ Kelly a few years ago via Facebook. We both run pages about girls on the spectrum and Tink can be very similar to Eliza. We’ve actually managed to meet face to face a couple of times, even travelling to Scotland together to meet two other page owners. Our girls have met and had fun at a party too. She’s an incredible friend and an inspiration, always supporting others despite how busy she is. Here are her answers to my questions:

Tell us a little about yourself

I’m Kelly, mum to Tink and H, and married to Dave. We live in the West Midlands. I left my career in early years to be Tink’s full-time carer, and now she’s at school I have my own Virtual Assistant business, which fits in with me home educating H.

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What is your connection to autism?

My 7 year old daughter was diagnosed with autism at the age of 3. We are also currently on the diagnostic pathway with our son, who is 11.

What made you start a Facebook page/blog?

I started my blog the day after Tink was diagnosed as a place to record my thoughts and feelings about this new journey we’d found ourselves on. I then added my Facebook page as a way to share updates and anecdotes with friends and family without wanting to post on my personal timeline all the time. I soon found kindred spirits in other parent bloggers and page owners, as well as autistic adults who write too.

Do you think there is enough support and resources in your area for autistic people and their families?

Is there ever enough? We have some services in our area, but they’re hard to access, limited to certain families, etc. There are a couple of parent-led support groups, but I’m not really a face-to-face kind of person! I feel there could be much more support for the whole family.

What are your thoughts about how autism is portrayed in the media?

For me, any portrayal of autism in the media gets people talking about autism, which has to be a good thing. I see autistic people complaining that we only ever see classic, more severe autism, or the more Asperger’s/ Savant Syndrome type shown in the media. I’m not sure this it totally true, but even so, the autism spectrum is so vast, and each person on it so individual, that there’s no way each person’s own experience could ever be properly represented. I’d just like to see more autistic people on TV and in film, just like there are in ‘real life’.

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What 3 books, related to autism, would you recommend to people?

The first book I read after Tink’s diagnosis was ‘Toast’ by Alice Boardman, mum to sons on very different parts of the autism spectrum. I related to many of the stories she wrote about, and it was the first thing that made me feel as though we weren’t alone.

I loved reading ‘Neurotribes’ by Steve Silberman, as it gave me a good insight into much of the background to the autism spectrum.

The third book I’d recommend is ‘Talking Autism: Parenting Your Unique Child’ by Victoria Hatton. As a SEN teacher and parent of at least one child on the spectrum, her book is full of useful strategies for helping autistic children in a variety of situations and scenarios.

Can I add a cheeky fourth book? Although I haven’t read it yet, I know it’s going to be fantastic… I’m really looking forward to receiving my copy of ‘Underdogs’ by Chris Bonnello. Chris, who is autistic himself, has written a novel about a gang of ‘misfits’ who use their diverse abilities to navigate their way through life in post-war Britain, and become the neurodiverse shoulders that the surviving population’s hopes rest on.

****Absolutely!!! I have read the book and it is incredible, you’ll love it. It can be ordered here: Underdogs by Chris Bonnello

What would you like the world to know about autism?

I want the world to know that autism isn’t to be feared. We tend to fear the unknown, it’s true, so make some effort to learn about autism. Understand how it can affect those with it – the difficulties they face, largely as a result of trying to live in a world that wasn’t made for them. Then try to use that knowledge to make change happen. Autistic people are some of the kindest, gentlest, most caring, considerate, intelligent, funny and loving people I know.

You can follow Tink’s journey here: It’s a Tink thing

You can follow H’s journey here: Homeschooling H

Kelly’s virtual assistant business is here: Kelly Kemp VA

A mini interview with Miriam

Miriam is a lovely friend and fellow blogger. We met through our Facebook pages and online groups that we are both in. She’s always supportive and encouraged me to keep blogging during times I felt like giving up. Here are her answers to my questions:

Tell us a little about you and your family.

My name is Miriam and I live in Scotland. I have a husband, two children and a large tank of tropical fish. I have a degree in primary school teaching but I am currently a full-time parent carer.

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What is your connection to autism?
My husband is autistic, though he wasn’t diagnosed until he was 59. Both of my children are autistic.

What made you start a Facebook page/blog?
Both were started for very different reasons and both serve a different purpose for me.
My blog (www.faithmummy.wordpress.com) was started on my 36th birthday. I realised I was closer to 40 than 30 and wanted to do something worthwhile with my life but having two four-year olds, one of who is significantly disabled, I felt so alone and stuck. My son had just been diagnosed with a genetic tumour growing condition the month before and I thought writing my story might help others. I wrote my first blog called ‘the story so far’ and within hours over 800 people had read it! I asked my brother (who wrote a blog for his work) what I should do next and he said I should update it. I asked how often and he said weekly! I was shocked but the next week I wrote more and for the last six years and three months I have written a weekly update.
When my first blog was published on another site after a few years everything changed. I began getting not only a lot of abuse and hate but a huge amount of support and hundreds of strangers friend requested me as they wanted to read my weekly updates. It was then I felt I should start a page where I could have followers and post updates without taking away from the intimacy that I posted on my own wall for friends and family.

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Do you think there is enough support and resources in your area for autistic people and their families?
That’s a great question. I think much depends on the individual needs of families and children. There are lots of support groups and groups for children but not everyone is able to access these for various reasons. I also think there is very little nationally for more severely affected children like my non verbal son.

What are your thoughts about how autism is portrayed in the media?
The media, by nature, have an agenda and want views so will always naturally be drawn to autism from the view of ‘Will people watch this?’ That means they are most likely to use extreme examples and in that aspect it can portray autism as extreme one way or other. The other factor is that there is no such thing as a ‘typical autistic’ which makes their task almost impossible. The more they feature it though the better for everyone.

What 3 books, related to autism, would you recommend to people?
It very much depends what the person is looking for. Story wise I love ‘After Thomas’ which is a story of one autistic boy and how getting a support dog helped him. My best feel good factor one would be What we love most about life by Chris Bonnello. As a general knowledge about autism book ‘the ten things everyone with autism wants you to know’ is good.

What would you like the world to know about autism?
That while every autistic person may have difficulties in social awareness and understanding, rigidity of thinking and have some repetitive movements plus communication difficulties that doesn’t mean they are any less than anyone else. For some autism is very much a major disability but for others it is more a difference. It’s about accepting people regardless.

You can find Miriam on Facebook here: Faithmummy

An Open Letter to Those That Walked Out of Our Lives After My Daughter’s Diagnosis

 

Dear Friends,

Well, I say friends but that’s no longer the case is it? There are still times I think about what used to be, all the amazing times we had and the memories that we made. The excitement of my pregnancy, the tears of joy and happiness when my daughter was born. How we used to love meeting up with you all, we all had babies around the same age. The first couple of years were amazing. We shared some great times. As our babies turned two it was becoming more obvious that my daughter, Eliza, was different somehow. You were all supportive and encouraging. “She’ll talk when she’s ready”, “Maybe she’s just shy” and similar phrases were offered as comfort and reassurance. Our twice weekly meetups continued as well as attending the same baby and toddler groups.

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Here she is, a few hours old.

Eliza failed her two-year check that is completed by the Health Visitor to make sure children are reaching the milestones for their expected age range. It was no surprise to me or all of you. Life carried on just fine until the day we all met at the park and I told you that Eliza had been referred to a Paediatrician and that autism had been mentioned as a possible diagnosis. Looking back, the silence and the looks were the start of what happened next but as I felt vulnerable and overwhelmed, I’d assumed you were all surprised by what I’d said. A few days later I tried to arrange a meetup in the park, the sun was out and it was a beautiful day. But you were all busy. I get it, life’s busy. After a few days I noticed the lack of phone calls or texts that used to happen frequently. Again, I tried to set up some play day fun, nobody replied.

One day, on walking home from town, I bumped in to two of you separately. You two changed our lives that day. Friend ‘A’, you asked if we were well as you’d not seen us at a couple of coffee mornings at ‘B’s house and would we be going to so and so’s party at the weekend. It was clear to me that we’d not been invited to a few things. In some ways I didn’t mind, I never expect to be invited to everything. But something about the way you looked at me suggested you knew more than you’d let out so far. As I walked home with a sleepy Eliza in her buggy I bumped in to you. Let’s call you friend ‘C’. You were the one full of sympathy. You were the one telling me how sorry you were that my child wasn’t normal. You did the head tilt to one side accompanied with the “awwww but she looks so normal doesn’t she”. I tried to explain that Eliza was normal thank you very much and that she was just different. Then you said the words that I’ve never forgotten to this day. With your hand on my shoulder, sympathetic eyes staring at me you said “Why don’t you adopt her out and get on with your life….. you can always have another baby”. I never replied to you. I didn’t know how. I felt like my heart stopped beating for a few moments, my breathing slowed as I tried to process your words. My daughter hadn’t even been diagnosed and people were leaving us and telling me to give her away. I remember just walking away from you and looking down at my beautiful child, wondering how anyone could even suggest what you did. After that day pretty much all invitations to meetups stopped coming. Eliza was no longer invited to birthday parties.

I’m going to Fast Forward seven years now and tell you a little of what you’ve missed out on.

  • Eliza is very academically able and excels in computers, English and Maths.
  • At 9 years old she reads at age 11-12 years.
  • She’s learnt to play a brass horn and piano recently and took part in a small concert in assembly.
  • At 9 years old, she was asked to be an ambassador for a clothing range that promotes Autism Awareness & Acceptance.
  • She can swim, run, ride a bike, roll down a hill and all the things your kids can do most likely.
  • Eliza has friends. She loves parties, going to the cinema and theatre. Despite anxiety and living in a judgemental world, she’s finding her place and loving life.
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Eliza age 9

There is so much more you’ve all missed out on and all because you were frightened by a word. Autism. It really isn’t a word to be feared you know. Eliza might be different to your children in some ways but she’s not less of a person because of her diagnosis. If you’d stuck around you’d see the incredible, intelligent, beautiful girl she is. You’d hear her terrible jokes and fall prey to her slightly sarcastic tainted sense of humour. She’d infect you with her big cheesy grin and giggles and she gives the best hugs ever. You’ve missed so much, and you hurt us deeply. I really hope since then that you’ve thought about it and explained what autism is to your children because the likeliness is there will be autistic kids in their classes at school. We’re living a great life without you. It’s just a shame you didn’t stick around to enjoy it with us. I used to feel so much pain when thinking back on those days. But that’s just wasted time in my mind and you don’t deserve to occupy that space any more.

From the friend you deserted & and her awesome daughter

 

***This blog was originally written for the Firefly Website and can be seen here: The letter on Firefly

 

 

 

My fears for the future for my autistic daughter

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Every parent has fears about the future, it’s natural to worry about the unknown because we want to protect, guide and support our children as much as possible and for as long as possible and the future cannot be predicted. I have the same worries as most parents – finding the right schools, finding out she’s being bullied and a whole bunch of other things. When you have an autistic child, a whole new bunch of fears come in to the picture.

Eliza likes to chat about the future, she loves to be involved and it helps her anxiety if she can openly talk about things. We’ve already been talking that she’ll go to a new School one day as she outgrows her Primary setting. She’s ten this year so we’re talking High Schools as this coming September when it is EHCP review time, we’ll also start planning for the changes to come when she’s in her final year. Now we all know there are not enough schools, let alone schools that will be able to meet her needs. Hence, we’ve already been in contact with some and are hopeful they have space for her when transition time starts but it’s a worry that there won’t be one for her.

Every week I hear of services and therapies being cut back due to lack of money. Eliza’s current school provide pretty much all she needs including speech therapy, occupational therapy and they even helped us get on the SEN dentist treatment list. But it won’t always be this easy. What will be available for her when she’s ready to leave school? What services will still exist? We already know about the fight to move from DLA to PIP, they certainly don’t make it easy that’s for sure. I want Eliza to be as independent as possible, she has already told me she doesn’t want to live at home forever and she’d like to live in some kind of supported living arrangement. Again, there are nowhere near enough of these places. I’m hopeful that more will exist, or a suitable alternative.

My biggest fear is knowing that I’m not going to be here forever. I’m not immortal, I will die one day, and I want to make sure she’s had as much guidance, love and support as she can to help her take on this crazy world as an adult. She is strong, confident and intuitive but also vulnerable. Vulnerable to those that could take advantage of her kind nature. Vulnerable to those that could manipulate or bully her. Vulnerable to her own feelings, she’s an empath and feels extremely deeply so we often talk about this and come up with ways for her to help her control the strong emotions she feels, how to process and filter through them and most importantly, how to take a step back and allow her own well being and mental health time for calm and recovery.

She’s only ten this year, but Eliza’s already overcome so much and she’s aware of how much we have to fight for services, therapies, school placements, EHCP’s. She’s a confident and very academically able child, she understands more than most people assume. I will never stop encouraging her to have her own opinion and to stand up for what she believes in because one day she’ll be doing this without me.

 

*** This was written for the Firefly blog which can be found here: Fears for the future