Published Sunday, April 30, 2017 by

Life with ASD Newsletter - no. 23

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

After the cold snap this week, I am looking forward to a bit more warmth and sunshine. Let's hope it comes soon.

This week, I came across a great video of Tony Attwood talking about autism in girls. In the video there was also some great insights into autism, and equally relevant for boys too, which I was particularly interested in. Definitely worth a watch.

I have been reading a number of posts this week by Miriam from Faith Mummy, who blogs about life with her twins, both who have autism. I could really relate to her post about Scanxiety, which talks about the anxiety she feels each time her son has a scan (he also has NF1) and has to wait for the results. Whilst we don't have to go for scans, it did remind me of the anxiety I felt each time we went for assessments and our EHCP reviews - only to wait to see what they would report back to us. The unknown can be so daunting.

With Eldest going through a phase of getting worked up over things at home, I read 40 calm down tools for older kids with interest. In particular I was interested in the Brainquest cards which are Q&A cards which I think eldest will really enjoy.

That's it from me, I am off to check that the frost has not wreaked havoc on the garden.

Articles this week:
  • The fight for the right school 
  • Richard and Jaco: Life with Autism - BBC One 
  • When the Weight of the Unknown Is Crushing You 
  • The ‘scaniexty’ I live with when my child has NF1 
  • Being forced to fight for things you never wanted to need. 
  • A letter to my son's first teacher - from a former teacher and autism mum - Someone's Mum 
  • On admitting it's ME who is overwhelmed and frustrated... 
  • Making a tiny bit of time mummy's 
  • Autism Awareness - #YourJourneyMyBlog - The Cloth That Keeps My Child From Breaking 
  • Parenting? 
  • 8 Signs Your ASD Child May Actually Have Have Pathological Demand Avoidance (PDA)? 
  • 40+ Calm Down Tools for Older Kids {Free Printable} 
  • 5 Autism Myths I Wish You Knew — Aspie Miss 
  • Special Education v Mainstream: Our Schooling Journey - My Home Truths 
  • Childhood Development: Between the Milestones - The Inspired Treehouse

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Published Saturday, April 22, 2017 by

Overcoming my moments of jealousy

There are fleeting moments when I get jealous. When a post pops into my Facebook feed or someone tells me of a great thing they've done as a family.  In these moments I feel like we are missing out as a result of my son's autism, and I struggle with the loss of things that we can’t do / struggle with / have never done.

It is not something that I am proud of as we are happy as a family and have so much to be thankful for. It is just that when I am reminded of some of the struggles that we face I need a little time to reset myself. Time to get past the thoughts of what we are missing out on, and time to remember the moments we do have and the achievements we have made.

Parties, friends and playdates

When I see children with friends, pictures of birthday parties or hear of their playdates, I am reminded of the things he doesn't get to experience. I feel the loneliness, but he does not. He struggles with social interaction and his need to control the world prevents him from making friends. He misses the friends he had when he was younger, but in a crowd of people it is his Dad that he turns to for company.

When I feel the loss of friendship, I remember his amazing bond with his Dad and realise that he has a great friend already.

Academic progress

When I see children getting awards, I am reminded of the fact that he has never received an award or even pupil of the week. I feel his lack of progress compared to his peers but he does not. He struggles in a classroom, requires a lot of support to get through the day and took years just overcome his resistance to writing. He is progressing slower than his peers and is not full-filling his academic potential, but he loves searching for answers to questions that most children don't even think about.

When I feel his slow academic progress, I remember his inquisitive mind and realise that he doesn't need awards or validation from others to make him feel successful.

Participating in sports and activities

When I see children’s sporting achievements or photos of the activities that they have taken part in, I am reminded of the sports lessons which did not work out and the things we can't do. I feel him missing out but he does not. He struggles with team sports and any regular lessons, so our weekends are typically spent at home, but given the choice he would rather run around pretending to be a superhero or playing with his Lego.

When I feel his missing out on sports and other activities, I remember the skills he has mastered to create some amazing Lego creations and his training plan to become a ninja. I realise that he doesn't need to play a sport or learn a new skill to feel accomplished.

Days out, holidays and special occasions

When I see families enjoying fun times together, I am reminded of the days spent on edge as work at 200% to help my son get through the day and avoid a meltdown. I feel the struggles that we go through but he does not. We need to plan our trips carefully and special occasions are often tough, but as a family we are learning what suits us best and have had unexpected moments when our son has gone out of his way to make us laugh or do something caring for one of us.

When I feel our challenges with family events, I remember our Saturday night dance-a-thons and the summer weekends in our garden. I realise that we don't need to go away or wait for special occasions to have special moments as a family.

Overcoming my moments

When I have my moments I remind myself that other peoples' lives are not just made of Facebook moments and happy stories, and that each family have their challenges that I don't always see. I remind myself that everyone has their moments when they deal with their own struggles, and they also likely have fleeting moments of jealousy.

I remind myself that it's ok to feel sad sometimes and that our family is defined by what we make of the moments that we have together, not by what we can't do.  I remind myself of how far we have come, and that we are making progress every day. Who knows where we will be tomorrow.

I first wrote this post for the AutismAwareness site.
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Published Saturday, April 22, 2017 by

Life with ASD Newsletter - no. 22

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

Back to school this week, and happy to say we made it through the Easter holidays.

With the end of April, the #yourJourneyMyBlog series that was run by Jodie from Autism with lots of love and Affection has come to a close. There were some really great stories shared by many families, including us.

Yvonne from Special Parents Handbook help a seminar to spread awareness on violent challenging behaviour, which I know has helped many parents dealing with this challenge to feel less alone.

I have also linked up with a new blogger, This Little Boy of Mine, who is a Stay at home wife and mum of three. Her youngest has ASD and suspected PDA (Pathological Demand Avoidance) syndrome. You can also find her on twitter. Do pop over and say hi.

Articles this week:
  • Happiness is a deep acceptance 
  • Wise Words 
  • They’re not asking for much.. 
  • Avoiding the E-Word (not thinking about our EHCP annual review) 
  • Understanding The Entire Spectrum Of Autism - Finding Cooper's Voice 
  • To the People I've Seen Less Since Becoming a Parent to Children With Special Needs 
  • Four Things My Severely Autistic Son Has Taught Me 
  • Tips for coping with the holiday period – Living with a Jude 
  • EHCP – The C isn’t compliance! 
  • Super Simple Hack to Revolutionize Your Morning Routine with Your Preschooler 
  • Tips for an Autism Friendly Bedroom and Bedtime Routine - Someone's Mum 
  • Behavior Social Stories - The Autism Helper 
  • Empathy didn't work. What do I do now? 
  • Do you have Magic Fairy Wings? 
  • Breaking the Silence on Violent Challenging Behaviour or VCB 

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Published Friday, April 21, 2017 by

Avoiding the E-Word (not thinking about our EHCP annual review)

ehcp annual review

It is19 months since our Son was awarded an EHCP, 16 months since our emergency EHCP review and 12 months since he started at his current school. This week we have our first EHCP annual review, and it is fair to say that this is something that I have avoided thinking about as our previous experiences were so stressful. In fact I have been focusing on anything but our annual review, as I seem to be plagued with a major case of writer's block.

The same thing happened when writing our parental views for the EHCP, and again when preparing for the emergency review. I was frozen by the enormity of the task. After all the questions that they ask are such BIG questions .... "What do you think is important for your child", "What do you want for your child in the future", and "What needs or outcomes do you think needs to included for your child". 

HUGE questions - keep you up at night questions! What do we want? What does he need? What does he want? How can he be supported to be successful in later life? What does successful mean for him? These are things that I have agonised over, time and time again. In truth, I don't know if I have answers to any of these questions. 

Then there is the need for all outcomes to be SMART - Specific, Measurable, Attainable, Relevant and Timely. How can I state anything which is specific or attainable when I don't even know what he needs or what he could be capable of in the next year with the right support? Do I even need to be SMART when writing my parental views. As a parent, I am not even sure that any outcomes that I state will be considered without a professional's report detailing the evidence of his needs and the provisioning required to address them? Our 

Which brings me onto the professionals views? He is at a special school where SALT and OT, and other specialist support is made available to children if the school identify a need for it. Does this mean that I don't need to consider this? Should we have asked (months ago) for him to be reassessed by the professionals to determine his current needs, rather than rely on the school's assessment? Have I let him down but not asking for these assessments, and just accepting that the school will provide the necessary input into his EHCP? A lot has changed since in the 2 years since he was first assessed - can we be sure that all of his needs will have been identified and the appropriate provisioning specified without additional input from other professionals?

Lastly there is school. They have made such great progress with addressing many of our son's triggers, which means that we don't have the daily calls about behavioural incidents, however he does not seem to be progressing academically. We have had a major breakthrough with writing and he now enjoys reading to himself, however he is significantly below age expectations across all areas of the curriculum. Looking back at his records he was reported at above age expectations for Maths, and at age expectations for Reading when he started a year ago. Why is this - it is the school or the result of him struggling more  over the past year? How do I bring this up? How do I do this in a way that it does not seem like we are at odds with the school? After all we want to have a collaborative partnership with the school, and not one of blame. 

How do I approach this in a collaborative way to understand the challenges, taking onboard the schools points of view whilst maintaining our stance on ensuring that our son receives the provisioning that he needs to address ALL his needs ... not just the behavioural ones? After so much fighting the system, I am not up for another fight. Am I able to ask for more help and support without seeming confrontational or pushy? 

There are so many things that I want to say, but can't settle on how to say it in a way that is right for my parental views. And so my mind turns, and the paper remains blank. Why is it so difficult to find the words when what I want has not changed?

I want an environment where my Son is understood and supported, feels like he belongs and has the opportunity to live the life that is right for him and makes him happy. Now if only I could find a way to express that in my parental views, with the outcomes I think he needs to make that happen. 

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Published Saturday, April 08, 2017 by

Life with ASD Newsletter - no. 21

weekly round up of autism and special needs blog posts & articles
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Published Thursday, April 06, 2017 by

The voice of my anxiety

My mind is racing.

Thoughts tumbling over one another, like waves crashing onto the shore. Racing from topic to topic, I can barely keep up - faster and faster the thoughts keep coming.

Thinking of everything I have done and how I could have done it differently, analysing every conversation that I have had, running through all the things I need to do and working out how I am going to do it.

There is no escape from the thoughts. Even in my sleep, they still keep coming and I wake up in the night when the thoughts have crowded out my sleep. There are no moments of quiet reflection. My body is filled with dread.

My stomach is churning and I have a sinking feeling that runs through my centre. Like a black hole, from which nothing can escape.

My body is tense. I can feel the muscles in my arms and back, pulled tight - the tension is always there. I am fighting my body, it wants to fight and lash out, anything to release the built up tension. I hold back, willing myself to appear calm.

I can't catch my breath.

My worries have worries. I need reassurance.

I want to talk it through. Can't stop talking. I talk to myself. Sort yourself out. Hold back, don't react. The feeling will pass and things will settle down.

I want to sort things out. I need to fix it. I need to do it all. Now.

My defences are up, and social niceties disappear. I want to escape, and run & hide. I can't trust myself with others as I fear that anything I say will make things worse. They will see I am struggling, I will annoy them, they will question my abilities.

I try to distract myself. Find something to slow the thoughts and calm the brain. I need to switch off, I need to calm down. Work through the motions, work through the chaos, work through the emotions.

It will pass, I know it will pass, it always does. A few hours, a few days, a few weeks - I just need to hold on.

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