Published Thursday, June 29, 2017 by

ASD & SEND Roundup #29

weekly round up of autism and special needs blog posts & articles

Another crazy week, with 12 hours work days and my brother over to visit from the states.

Thankfully after a few days where the family were super excited, and a bit manic, to have a guest in the house, everyone settled and we made it through the week.

Not much time to write this week, so I will just leave you with all of the great blog posts that are in this weeks roundup.

Helen xx

Articles included in the roundup this week:
  • Internships for autistic graduates at Deutsche Bank - Autistica
  • Understanding Your Aspergers Spouse/Partner 
  • When Your Child Has A Mental Illness - Not The Former Things 
  • Testing the effects of expression, intensity and age on emotional face processing in ASD 
  • Special needs children's charity faces closure 
  • Middleness? 
  • Families – the Key to Person-Centred Care 
  • Who would we be without our sisters and brothers? 
  • After a Kid Refused to Be on Her Team, This Girl With Autism Did Something Incredible 
  • This is what I wanted to say… but didn’t. - Someone's Mum 
  • When I Was Afraid of Autism - Not The Former Things 
  • Mermaids cave
  • The grateful SEND Parent and a cup of tea 
  • The Difference Between Me and You 
  • Why it's ok for my autistic son to be playing Minecraft on a sunny day 
  • It will be worth it…. trust me. 
  • Do lower expectations equal happiness? 
  • Sensory Processing Disorder - It's Real and It's Never Too Late - Not The Former Things 
  • New School – The Worries and the What-Ifs 
  • 533: Interviewing Individuals with Aspergers Syndrome

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Published Sunday, June 18, 2017 by

ASD & SEND Roundup #28

weekly round up of autism and special needs blog posts & articles

It has been a crazy busy week with our wedding anniversary, my company offsite, a neighbourhood street party, Father's day lunch, and my brother is visiting us for 2 weeks from Seattle.

After such a crazy week it is lovely to be able to sit in my garden listening to the birds and take some time for myself. I am increasingly working out how important it is for me to take time out, especially when life gets busy. For years, I have been going to the doctors for blood tests as I was concerned about how tired I was on Saturday mornings ... no matter how much sleep I got. I now realise that I need Saturday mornings to myself in order to "power up" after the demands of the week and the pressures of parenting. After feeling guilty for so long, I am finally starting to accept that it is what I need to be able to function.

With a visitor in the house, Eldest has also had a difficult week. The first night he was wound up tighter than a spring, and it took us hours to get him to calm down enough to be able to go to bed. After a few days of being in a state of heightened anxiety, we seem to be calming down again. It has been a reminder to us that we need to prepare Eldest for when people come to visit us, and for us to ensure that we have something planned to help him work through his emotions during these times. My mum will be heading over to visit us from South Africa for a few weeks. Hopefully, we will be better prepared for her visit.

This week I was struck by two blog posts Scary Mommy's The Loneliness of Special Needs Parenting and Ellen Stumbo's Special Needs Parents you are not invisible, I see you. Being a special needs parent can be challenging, and incredibly lonely at times. The community of SEND parents can make such a difference, especially during the challenging times when you need understanding, advice and support from other parents who have been through similar challenges.  Please do get in touch if you have any questions - if I can't answer it, I know a great group of SEND parents who will be able to offer some advice.

A happy Father's Day to all the Dads, and all of the amazing mums.

Helen xx

Articles included in the roundup this week:

  • I will not let a broken system break my little boy. - Someone's Mum 
  • James An Interactive Cartoon And Games From Chaudron Magique - Savvy 
  • The genius in people with learning, mental health issues 
  • How Does A School Decide If They Can Meet The Needs Of A Student With SEND? - Mummy Times Two 
  • Why I dislike the phrase ‘If you’ve met one person with autism…' - Someone's Mum 
  • SEND Round-up: Awareness, behaviour & care | BritMums 
  • Parenting from a special Perspective: Life with ASD and the rest 
  • 1001 Awesome Adventures to Defeat Boredom This Summer - UK Yankee 
  • Inclusion at its best 
  • The Glad Game - Mummy Times Two 
  • Special needs parents, you are not invisible, I see you - Ellen Stumbo 
  • My Explosive Child Has Lost Control - What Do I do? - Not The Former Things 
  • Politics and Special Interests. 
  • Learning About The World With North Star Geography - Not The Former Things 
  • Listen. 
  • He’s 9 years old and has autism. He’s headed to gymnastics nationals for the third time. 
  • How to answer our children's awkward questions ... 
  • The Loneliness Of Special Needs Motherhood 
  • Why my autistic son would be a great father 
  • The one where I confess 
  • Birthdays, Cake & Autism
  • The Reality of Autism and Lack of Danger Awareness 
  • What Happened When A Child Refused To Have My Autistic Daughter In Her Team

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Published Monday, June 12, 2017 by

ASD & SEND Roundup #27

weekly round up of autism and special needs blog posts & articles

The past two weeks have passed by in a blur - first was the bank holiday, and then I was struck down by some kind of bug which knocked me for 6 (and the reason why I missed the round up last week). At home Eldest is going from strength to strength with his new found cycling abilities, and poor Dad is being dragged out at the crack of dawn at weekends to go cycling around the neighbourhood.

After my recent blog post about Love being Measured, I had to try hard not to whoop out loud when I was told that I was "the best mum in the world". We still have not got to the stage of me being allowed to touch him or mentioned the "love" word but it is progress. With a book of our own to read together and my ongoing attempts to point out the things we have in common, I am determined that one day we will get there. If all else fails, I will apply for a job at Lego Headquarters which will no doubt earn me bonus points!

The election brought about some extra fun - Eldest voted we should move to Legoland for the Summer and Youngest voted to have the butterflies at nursery released into the local woods. With the elections behind us, it will be interesting to see what will be done to improve standards of cars for those with learning disabilities and autism.

We have a specific task to improve standards of care for those with learning disabilities and autism. We will work to reduce stigma and discrimination and implement in full the Transforming Care Programme.

This week I have the pleasure of being part of the wonderful Parenting from a Special Perspective series, which is hosted by Diary of an Imperfect Mum. If you have not come across her before, then I encourage you to read some of her glimpse into autism posts which are a series of short letters that explore how autism effects them on a day to day basis.

With the bank holidays are behind us, we are now looking ahead to Summer. With the long school holidays I am looking for ideas to keep the kids entertained, so if you have any ideas (which don't involve much travel) then please get in touch and let me know.

Helen xx

Articles included in the roundup this week:
  • SLT Appointment
  • Speechify: Give your child a voice -App for Kids with Autism
  • NHS groups backtrack on proposals to restrict autism diagnoses
  • Should Children With Autism Wear Electronic Trackers?
  • Autistic Adults and other Stakeholders Engage Together Meeting (AASET)
  • Making “invisible” needs “visible”- Tried and tested tools that deliver | SEN NAV
  • Autistic Women – Why Are We Invisible?
  • The Anxiety Diaries - Being Honest - Blogger Mummy Lauren
  • School allocations with SEN | Pinkoddy's Blog
  • We need to ditch the 'One size fits all' stereotype of depression
  • You Have Been Officially Autistic For One Year - Me, The Man & The Kids
  • A hidden disability
  • A letter to … my severely disabled eight-year-old daughter
  • Using Schedules To Reduce Meltdowns - Mummy Times Two
  • Why I Wanted the Autism Label for My Son
  • The case of the misguided SEN Officer.
  • Parental guilt.
  • They tried to make her go to rehab… she says no, no, no

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Published Saturday, June 10, 2017 by

Secret fears and hopes

embracing vulnerability to overcome my secret fears and achieve my dreams

We all have them, those unspoken thoughts that play in the back of our mind. Thoughts that we don't say out loud, or share with the people closest to us. The things we want to do or say, and the things that hold us back.

Recently I have been reading Daring Greatly: How the Courage to be Vulnerable Transforms the way we live. In the book, Brene Brown says "Courage starts with showing up and letting ourselves be seen". She then goes on to talk about how embracing your vulnerability and living whole-heartedly can help you face the things you fear. How acknowledging our fears can help us dare greatly.

As I read, I kept thinking yes, yes yes. Then I attended a Daring Voices event and met someone who seemed so confident and self-assured. She stopped me in my tracks she when talked of what she wanted to achieve and told me "I am scared". I was struck by how much power there was in that statement, and how much it resonated with me. 

I decided to make a change. I have been hiding for so long, pretending to be strong and struggling with so many things on my own. I have been open about my struggles with anxiety, but have never had the courage to admit to the specific things that I struggle with or fear.

Courage starts with showing up and letting ourselves be seen-- Brene Brown

In the past few months, I have spoken out about my fears and shared the secret thoughts that I have been carrying around with me. It has not been pretty. It has been messy, jumbled, raw and emotional.

I told my husband of the things I feel guilty about, my internal struggles, and my feelings of not being good enough. My struggles with not having a close and loving relationship with my son, who wants his Dad more than me. The guilt of sleeping in at weekends and staying in my room to recharge, rather than spending that precious time with my family after I have been at work all week. The shame and thoughts of "if you only knew the truth" whenever anyone tells me that I am a great mum or I do so much for my family. I was amazed how little he knew of my secret fears after almost 10 years together, which shows how well I have been hiding them.  

For the first time, I spoke of feeling disconnected and alone, despite all the people around me. I have spoken about my feelings of often feeling like I am on the outside looking in, whilst everyone else seems to get on with each other so easily. My secret thoughts that people don't really like me, and they are just "being nice" to me because they don't want to be impolite. The fear that I feel when I walk into a crowded room and am expected to mingle, even when there are people there that I know.

At work, I "confessed" to my manager about the work situations that make me anxious. It was hard. I didn't want my struggles with anxiety to affect their perception of my abilities but I feel that it is key for me to get the support I need. I may have totally blown any chance of getting my promotion, which I have been chasing for over 4 years now, but I need to change things and struggling in secret has not been working. I was scared and sometimes confrontational, but he listened. It feels quite liberating to be able to say, "this is me, and this is what I need".

It feels quite liberating to be able to say, "this is me, and this is what I need"

I have opened up about my disappointment and frustration of not being able to easily get on with so many people at work, and generally being seen as "hard work" or "not suffering fools easily". I am tired after 7 years of trying change to think more about other people and not create conflict.  I have highlighted the pressure I feel to get it right with the people around me and the feelings of failure when I don't. This is the thing I am most ashamed of, and have struggled with. Despite all the books, introspection and attempts to try out various techniques, I can't get this right. I have admitted that this is not something I can do, and need help with.  

I feel like I've been truly honest, for the first time. I have not just spoken about the things that I think people want to hear or feel comfortable listening to. I have mentioned the comments from my past that have hurt and haunted me. The words that are always in my mind, threatening to undermine me in everything that I do. The words that are holding me back from speaking out about my hopes and dreams.

Speaking about my fears has given me the courage to speak about my secret hopes and dreams. I have given air to the things I would love to do and achieve, but haven't found the courage to say out loud for fear of failure.

So here they are in no particular order.

To become a public speaker, where I can use my experiences to help and inspire others.  For other families like ours who are discovering what autism means for them, and for children who are young carers or from disadvantaged backgrounds. My early years were spent caring for my family as my dad passed away when I was young and my mum struggled with undiagnosed bipolar disorder. I was told at school that my future options were limited because we didn't have the money for university, or further study. I want other children facing similar challenges to know that it is possible. I found a way to do it, and they can too. 

To become a neurodiversity champion, and to help bring about a much-needed change in how companies support people with autism, social difficulties and anxiety at work. 

To get my promotion and be recognised for the work that I do. This means taking the time to clearly understand what I need to do to achieve this, the support that I will need for the things I struggle with, and enlisting the help of those around me to make it happen.

To go on a 2 week holiday without my kids so I can truly relax for the first time in years, decompress and work out what I need for me. To get away from it all, and spend time focusing on working through my many thoughts and think about what I want. 

To rebuild my friendship circle, and find some friends close by that I can meet up with to talk about the things that are happening in my life (over a glass of wine or two). People I can be myself with. People who I can feel connected with. People who feel comfortable enough with me to invite themselves over for a visit. 

I feel exposed and my fears have not gone. I don't know if my new found honesty is going to trip me up or spur me on. My dreams are just words on a page, and I have no grand plan to make them a reality. In fact, if I am honest, I don't really know if these are my real dreams or whether I am just listing the things that I think "would be nice".

I feel exposed and my fears have not gone

Speaking out has not helped me radically change my life but I am talking more to people around me about things that go beyond the surface. We are sharing more about how we feel, and I feel like people starting to understand a little more about the real me. I am also starting to understand myself more and I am starting to embrace how I am rather than be secretly ashamed of the things I struggle with. 

It feels like a start. 

I can see small things starting to change, and the possibility that these small things may lead to big things. The big things might be one or more of the dreams on this page, or it may be something completely different. I don't always get it right or know what I want from life but I do know I want something to change. 

So from now on, I am committing myself to wholehearted living and embracing my vulnerability, no matter how scary it is. 

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Published Friday, June 02, 2017 by

When love is measured not felt

trying to make sense of love between my son and i

I like you, but I don't love you, not even a little bit. Hard to hear from someone you care about, even harder when it is your 7-year-old child.

This is how my son responded to me recently when I told him that I loved him, and it hurt. It hurt a lot. It wasn't the first time, and he wasn't trying to be unkind. He doesn't realise that words can have an emotional impact on others, especially when it is "the truth". By truth, I mean a thought in his head.

That night I wondered does he even know what love is? Dad was dispatched to talk to him about what he had said and to try to understand why he said it. The talk revealed that he determines who he "loves" based on an assessment of what he likes and doesn't like, and the extent to which that person is similar to him or does the things that he wants to do.

He likes Lego, superheroes, Star Wars, watching TV, Asterix comic books and eating treats. He doesn't like people not listening to him, too many rules (unless he has made up the rules), being told "No",  and shouting (unless he is the one shouting).

Daddy is a boy (instant bonus points) and likes doing lots of the things that he likes - he loves Daddy. Mummy is a girl and doesn't like all the things he likes. Also, she has too many rules & she sometimes shouts. He just likes Mummy.

For him, this makes sense. He knows what he likes and doesn't like. He can work out if other people like the same things as him, and the determine how much he likes or loved them by the sum of how aligned they are to him, his wants, and his expectations.

It doesn't make sense to love someone who is not aligned with his likes, wants and expectations. How can you love someone when you don't like the same things, and they don't always behave the way you want? It also doesn't make sense that I would get upset when he tells me that he doesn't love me.

Two days later as I sat in the garden thinking about life and his views of love, I was surprised when he turned up with a plastic bunch of flowers and suggested that I sniff them as if they were real before disappearing inside. Wondering where that came from, I remembered the cake he insisted making and decorating for me on Mother's Day, and the joy on his face when he saw me at his end of term assembly.

Sitting there I wondered Do I know what love is and how see love in others? Do I need my son to love me in the same way as his Dad?

It seems like I am not the only one to have questions about love. What is love is one of the most frequently searched phrases in Google. Reading through the definitions, I realised that everyone has their own definitions of what it means to love and be loved.

love is a variety of different feelings, states, and attitudes that ranges from interpersonal affection to pleasure. It can refer to an emotion of a strong attraction and personal attachment. Love is based on trust, and may take time to develop, like is an instant feeling
Reading through the definitions, I was reminded that love is not measured by words, and it has many different forms. If love can grow when there is trust and our love for someone can change, it is up to me to ensure that there is trust and that he feels loved. The important thing is that he continues to know that I will be there for him no matter what.

I don't know if my son loves me, but I'd like to think that he does. I know that I love him, and will always strive to make sure that he feels loved. I realise we may never reach the stage of kisses, cuddles or unguarded emotion, but he likes me and sometimes takes my breath away with an unexpected action of affection. I'll take that. At the end of the day, it is our actions that speak louder than our words.

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