One moment in time with Spectrum Mum

27 April 2017

Welcome to one moment in time, a guest posts series, where bloggers share the stories behind special or significant photographs. I am kicking off the series with a photograph from our album. 

It may be a little grainy but I love this photo of the big lad and my nana. It has a really special place in my heart as this is probably the last shot of her that I have. 


Nana Dot was a major influence in my life growing up. She was an amazing woman, full of life and energy but most of all kindness. Her door was always open to anyone in need. Wherever nana was she brought fun, light and happiness. She was also very small, 4 feet 11 1/2 inches to be precise (she always said the 1/2) but what she lacked in stature she more than made up for in personality!




This was the last time we saw nana in her own home. We were over in the UK for the holidays and popped in to see her. I remember the big lad running in excitedly because he wanted to find out if he was bigger than nana. He ran into the kitchen shouting, Nana am I bigger than you now? Her reply made us all laugh, Wait a minute darling while I stand up straight. 

The look on his face should tell you that he was indeed taller and this photograph was taken as evidence. 

I have so many amazing memories of my nana; Saturday night sleepovers, the smell of pressed powder and lipstick, playing queenie who's got the ball, running for the ice cream van, a pint with a half glass, singing Doris Day songs on a Sunday morning, handwritten letters with a five pound note tucked inside... But this has to be one of my favourites. Proudly standing with her great grandson. A very special moment in time!

The Dutch are a strange bunch because...

26 April 2017

Dear friend,

Tomorrow  is a special day in Holland. It is King's day. A national Holiday where the Dutch celebrate their King's birthday and general Dutchness and join in with loads of festivities most of which will include a beer or two. It is a fun day for all! 

On days like this I usually find myself thinking about our choice to live in Holland and the differences between Dutch and English culture more. Rather naively, I didn't anticipate many differences but I guess when you fall in love you are looking for similarities not differences. After more than ten years living in Holland, I notice the differences less but they are there.



The Dutch are a strange bunch because...

1.
Text: They build the steepest stairs in the world - picture of steep stairs

2. They drive big family cars but have tiny car parking spaces.
3. They have huge windows but never shut their curtains
4.
Text: The Dutch love wearing Orange - a huge crowd all wearing orange
5. They don't eat pies or pasties
6. They hate people turning up at their homes without an appointment. Want to meet for coffee? Bring your agenda and plan it in, weeks in advance.
7.
Text: Dutch sit in circle and drink coffee at birthday parties
See the dutch circle party guide from Invading Holland.
8. They ask you how much you earn
9. Every decision is discussed and negotiated
10.
Dutch people don't queue - people crowding around the train
11. Dutch men drink lots of milk, at lunch time in the office you will see a colleague with his broodje en Melk (sandwich and milk)
12. They eat cheese and ham sandwiches and cake for breakfast
13. Anything deep fried is considered a Dutch delicacy.
14.
Kids are allowed to eat chocolate sprinkles on bread
15. They say the f word on the radio and TV
16.
The Dutch can ride bikes with 3 kids, a buggy attached and side bags full of shopping whilst carrying an umbrella
REALLY!
17. They clap when the film ends in the cinema and some cinemas still have intermissions.
18. The shops close on a Sunday and on a Monday morning.
19.
Dutch need little excuse to change out the flags

20. Everyone will speak English with you until a certain time when everyone will refuse to speak English and suddenly start loudly speaking Dutch at you. Now you know you've been integrated!

Disclaimer: I love living in Holland. You can read my Why I am proud to call Holland home piece here.


Book Corner: My Brother is Autistic

17 April 2017

My book corner choice this month is: My Brother is Autistic by Jennifer Moore-Mallinos

I told my teacher that I wished more kids understood autism, because if they did, then maybe they'd give kids like Billy a chance!

We ordered this book to help our youngest son understand more about his brother's autism (read more here). We had some books at home but the title of this book seemed to fit our purpose precisely. I was initially draw to it by the title and then the wonderful illustrations by Marta Fabrega.


Parenting from a Special Perspective: Living with a Jude

10 April 2017

Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs. 


Welcome Alice. Alice is a mother of three children, one of whom is her 10 year old son Jude. Jude has severe learning disabilities and attends a special needs school. He was born with Microcephaly and thus has Global Development Delay and undiagnosed autism.


1. When did you first realise your child has microcephaly?
Jude has microcephaly, Global Development Delay and as yet undiagnosed autism. I say as yet undiagnosed because I would literally bet my life on the fact he is slap bang on the Spectrum but because the waiting lists for assessment is so ridiculously long in Hertfordshire (around a year and a half), we’re still waiting. Our assessment should be done February time.

I realised Jude had something different about him when he was literally a month or so old. I was part of an antenatal group and he just wasn’t like the other babies. Vacant, he could just stare at something but it was as if he was looking through it at times whereas young babies generally look as if they’re taking everything in.

2. How did you feel when you found out that your child has microcephaly?
We asked to be referred three times before we were allowed to see a Paediatrician, he was about ten or eleven months by now. I think I felt quite blasé about it all really which sounds so stupid to me now. Our Paediatrician couldn’t really give us any hard and fast answers such as will Jude ever catch up with his peers? This was a big question I wanted answers to but needless to say because everyone is different, it’s entirely unanswerable. After the blasé attitude went away, I didn’t really feel anything negative for a while as he was still so young and his differences could be brushed away with a simple “ahh he’s just tired today” or “No, he doesn’t really know how to do that yet.”


3. Where did you first turn for help?
The Paediatrician we saw at Addenbrooks Hospital in Cambridge was fantastic and she guided us to a Physiotherapist so we could help Jude begin to move and crawl.

4. What advice would you give a parent who suspects or has just found out that their child has microcephaly?
I think I’d tell them to not give up on what you want for your child - you know what they need and what your family needs so don’t back down. I’ve had many a battle with our council but feel I’m slowly carving the services out of them that Jude really needs.
Also, it’s ok to feel super exhausted so don’t feel bad about asking close friends and family for support. I literally couldn’t survive without my parents.

5. What exactly is microcephaly? Did you know what it is when it was first diagnosed?
Microcephaly basically means small (micro) brain (cephaly) Jude’s head circumference was way way down the charts when he was born in comparison to his length and weight which both always cruised around the 75th centile line. At birth his head circumference was on the 5th and it slowly sloped downwards rather than up the chart. It’s marginal though, you really can’t tell from looking at Jude.
I wrote a post about it a while ago so if anyone would like a look then the link is here

6. What are the biggest challenges facing your child and your family?
Wow, where do we begin. Jude is a million miles behind his peers and currently functions at around 4 years old. Behaviourally Jude can be a nightmare which I think is partly down to frustration but also his autism. He’s literally like a jangling bag of energy and emotions. His speech isn’t great so he gets frustrated from lack of comprehension and communication. He struggles with fine motor skills so self-help skills are very poor - he can’t yet do up buttons or zips. He has mild physical problems because of low muscle tone so is pretty wobbly on his feet. He was turned down for Physio and Occupational Therapy for a long time but recently I kicked up a massive fuss and they’ve agreed to assess him again for both (yay me)

As a family we struggle because Jude often won’t do things we’d like to do so for example if we want to go for a walk into town but Jude’s in a funny mood then he’ll refuse to leave his bedroom so I’ll be stuck in with him and Joe takes the girls out. We can’t function as a family and it’s really becoming a difficult situation for us all.

7. What has been the greatest help for you, your child and your family in overcoming these challenges?
I’d love to say that social services have helped take the stress out of our lives but that would be a massive lie.
My mum. She used to drive all the way up to Cambridge from St. Albans to attend multiple hospital appointments with me from when Jude was tiny. She continues to be the support our family desperately needs and as a consequence her and Jude are incredibly close. She has always been a huge part of his life and we are forever grateful.



8. What has surprised you the most about raising a child with microcephaly?
How much it has changed me as a person, or perhaps not changed me but helped me realise what is important. You’d be surprised at some of the negative comments people say to you, how many people stare and point and how incredibly unimportant and tiny you can feel in society. There are times when I choose to stay in with the children because the thought of going to the swing park with Jude is too stressful. I actually wrote a book about our experiences which is mid-publication at the moment because I felt it important for people to see that not every family is as perfect as what they perceive their own. I also wrote it because I realise how many people with a disabled child feel incredibly isolated and this can lead to all sorts of mental health issues.

9. What’s the main bit of/the best advice you’d give another parent who has a child with microcephaly?
I’m not sure I have much advice for people but I guess I’d say to not listen to any negativity, your child has as much right to do whatever they want to do as any other child on this planet. Fight for what they need and what you need as a family and just be happy. Do what makes you all happy, we don’t all read from the same script.



10. Generally, what have you learnt about parenting, life, people or children from your experiences as a parent of a child with additional needs?
I’ve learnt that parenting a child with additional needs is more exhausting and relentless than you can possibly imagine but as with life, everyone’s experience is different. I try to focus on the positive because the negative (which I could literally talk all day about) just drags you down.

I have realised that there are some wonderfully kind and caring people out there and we are lucky enough to encounter them by raising a child such as Jude. He is beginning to have Support Worker time and it is amazing how wonderfully caring these people can be - Jude still talks about his first ever Support Worker who sadly moved abroad. She was wonderful and really set a benchmark for our expectations.

I have learnt that children can be really wonderful people and through watching interactions at the swing park or other playground-type area, people should really listen to their children more. I’ve had little children give up their swing or place on a roundabout for Jude and show other acts of kindness. It really humbles you.

Alice blogs at  Living with a Jude. She examples life with her severely disabled son plus his two younger sisters. I love the honesty with which she writes. Alice started to write as a way of connecting with people in similar situations, she had done a lot of reading on parenting a child with learning disabilities and was horrified about how isolated many people feel. She didn’t want anyone to feel they were alone. What an inspiration! I particularly loved her comment - we don't all read from the same script... Thank you for taking part in the series. 

Autism and Wandering

5 April 2017

Dear friends,

My son used to be a runner... It was one of the most difficult times of our lives. We literally could not turn our back on him for a second or he would be off. When little man was born we needed a double buggy because I could not trust the big lad to sit on a buggy board, he had to be strapped in or he would bolt. I will never forget when he ran at the beautiful wedding we attended on the beach. I thought he was with hubby and hubby thought he was with me, panic ensued and then we noticed a tiny green dot miles up the beach. Hubby ran... we were lucky! We were even luckier that he grew out of it!

This weekend a family were not so lucky as their son wandered onto the motorway that passes our village and was killed by a car. An absolute tragedy for all involved. My heart goes out to the family and to the driver of the car. A tragic accident that has been made even sadder by some of the uniformed responses on social media.

People obviously do not understand how common wandering is amongst autistic children or how difficult it is to prevent.


Wandering is:

When a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is exposed to potential dangers such as traffic, open water (drowning), falling from a high place, weather (hypothermia, heat stroke, dehydration) or unintended encounters with potentially predatory strangers.


Autism-wandering statistics

  • Roughly half, or 49%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. 
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. 
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number 
  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury 
  • 32% of parents reported a “close call” with a possible drowning 
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers 
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering 
  • 40% of parents had suffered sleep disruption due to fear of elopement 
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings 
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional 
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician 
Source: Interactive Autism Network Research Report: Elopement and Wandering (2011) 
Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012) 


The primary reasons for wandering include:

  • Enjoyment of running or exploring
  • To get to a place they enjoy (like a pond)
  • To get out of a situation that causes stress (for example, being asked to do something at school or getting away from a loud noise)
  • To go see something interesting (for example, running to the road to see a road sign)



What Can We Do to Keep Children Safe Who Might Wander?


Plan

  • Watch the child’s behaviours - Ask yourself what type of wandering best describes your child/adult (goal-directed, non goal-directed, random, sudden runner, etc.)
  • Have an emergency plan to respond
  • Keep information about the child up-to-date (picture, description)
  • Secure the home (fences, door locks)
  • Keep identification on the child (ID bracelet or information card)
  • Understand if the child/adult has a goal (Are they trying to get to water? Train tracks? Nearby park?)
  • Understand if the child/adult is trying to get away from something (Is there too much noise? Is there too much commotion? Is there boredom?) so that it may be addressed.

Prevent

  • What are the triggers? Notice signs that the child may wander off before it happens (for example, child makes a certain sound or looks towards the door)
  • For children/adults who respond to visual prompts, consider adhering stop signs on all doors at home/school, windows and gates
  • Be alert about the child’s location
  • Provide a safe location
  • Inform neighbours
  • Alert first responders
  • Place battery operated alarms on the doors that give a beep when they are opened
  • Consider having an Autism care dog - dogs can be trained to sit still when children try to bolt

Teach Safety Skills

  • Respond to safety commands (“stop”)
  • Learn to state their name and phone number or show ID
  • Learn to Swim
  • Learn road safety 
  • Read social stories 

Like people with dementia, Children with Autism Spectrum Disorder (ASD) are also prone to wander away from a safe environment. We are extremely tolerant of and sensitive to the feelings of family members of people with Alzheimer's who wander. Perhaps we are less tolerant towards families of autistic people because we see adults (even adults with dementia) as responsible for themselves yet children/teens with ASD wandering are seen as the responsibility of their parents.

ASD families need more support not blame. ASD parents face a massive amount of stress every day and wandering was ranked among the most stressful ASD behaviours by 58% of parents.  How can you support? By reading this article, by understanding that stress,  by being aware, by not judging, by becoming a first responder in your area, by asking that child wandering alone if they are OK...

Living with a runner is extremely difficult! When my son was young I found it hard to go out of the house on my own (especially as I had a baby too). He needed to be strapped into the buggy/car first.  He did not respond to stop or his name. Leaving toddler group every week was a particular nightmare as he would fight me all the way and I would desperately cling onto his hand and wrestle him to the car. I could not let go of him for one second! Sometimes I just did not have the energy to leave the house with him and would avoid busy places. No wonder some autistic families feel/become isolated!

We need to extend our understanding and support to families of autistic children who are facing a great challenge. It can be extremely difficult to teach autistic children the dangers associated with wandering behaviour.

But mostly we just need to be kind and think before making quick, ill informed  judgements on social media!



Photography @My_Dutch_Angle

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