September 2010 Member Q&A: Hayles (Hayley)

Thanks Elena for asking me to do the Q & A this month, been busy few days & off tomorrow for long weekend in Paignton so shall get round to these on Monday when I get back. So if anyone else wants to add feel free.

Hayles x

Ok, finally got some quiet time to think & answer the questions.

1. What's your story - how are you involved with autism?

My 1st intro into autism was through my Grandparents & Parents. Both fostered, my Grandparents fostered 218 children I don't like the word 'Normal' But my Mum grew up & once marrying my Dad. They to started fostering, they fostered 70 children in total & these Children were children with Challenges facing them throughout life - Down's, Celebral Palsy, Special needs both Mentally & Physically. This was alongside bringing up 4 children of their own. My sister was diagnosed with ADHD at a young age. Watching my Grandparents & parents open there hearts & homes to ALL these Children I to wanted to do something. So I went into a career of working with Children & on occasions Adults. I worked with 'normal' but I had caught the bug from my parents & I thrived on challenges. So I went into working with Special needs, I also worked with 2 Thalidomide mums & there children. It was in my career I 1st was faced with children with Autism. So when Mark was born & watching him grow up & little things showed themselves, I looked at my Family. A sister with ADHD & a Brother severley Dyslexic. I questioned things & spoke to my Mum & Dad. I was told it was me & my Son just needed a good slap. But what I saw growing up as a child from a very young age to now I knew there was more to it. I now have my son Mark, 6 years old & finally diagnosed in March with Asperger's, after a year & a half Battle. I wouldn't be without him, he is the most loving child ever.

2. How did you find Talk about Autism and how long have you been with us? (Sorry, Hayles, I've already answered part of this question!)

LOL. Just over 6 weeks now. I heard about this site via my tv, watching the Keith Duffy talk about Autism. I love it, its been so helpful & also makes you not feel so alone when dealing with every day life with my Son.

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

* Seek help – Never be afraid to ask for help when things get tough or you need advice.
* You are NOT alone - there are others out there who know what your going through & can be there for you & offer helpful advice
* Mark is MY child, don't let their Autism/Asperger's distract from your love for them. Watch  them grow, listen and learn from them.
* Educate your Family & friends. Some will understand & stand with you, where as others will not.

4. What has been one of the most difficult encounters you've had with regard to autism?

* Mark running out onto a BUSY Dual carriageway of fast speeding cars with no idea of the danger he had put himself or Dad in. Because his Dad ran out 1st to stop the traffic. Oblivious to his surroundings & what was happening.

5. If you had to describe autism in no more than 3 words, what would they be?

Hmmmm, hard one. But would say, Patience, Frustrating & Challenging'

And just for fun:

1. What would your dream holiday be?

I have had my dream Holiday twice already & have already booked it for a 3rd time next year, lol.
Scotland, callander to be exact. Mark loves it there & we ALWAYS have an amazing time. We do fun things in the daytime as a family. But of a evening I work alongside my Aunt & Uncle on their Farm with the Highland cows & love it.

2. If you got stranded on a desert island, what 3 things would you take?

Hmmmmmm, I was asked this once & I would hope it was a Desert island like in the films. So abundance of food, materials & animals. So I would take
* my husband
* my son
* My husbands tool box (it has everything in it beyond belief) LOL

3. Tell us about something that you really enjoy doing.

Ohhh ummmm thats hard.
* Spending time with my Hubs & Son
or
* Spending times with my Furries, lol

I was chatting to a friend this morning about families & once again the word 'Normal' cropped up. So we looked up the definition of
'Normal' - conforming to the standard or the common type; usual; not abnormal; regular; natural.
It made me think the children who my Grandparents & parents opened there hearts & house to were far from Normal with all there different stories to tell. Daren's parents have taught Daren to be a perfectionist, I have worked for the last 13 years of our marriage to show Daren. That their is No such thing as 'Normal' or 'Perfect'
If we each look at our life' would be say we lead Normal or Perfect life's. To be honest I think I would hate it. Saying that though I live my life with Daren & Mark & at times its hard, you get the Good, Bad & Ugly times. Am I happy with my Life? Yes
These people who live there life's thinking everything has to be Normal & Perfect, the Outlaws being in that Category lead very sheltered life's. My MIL said to be once, ' If you ever have a child with Special Needs we won't be happy' This comment was made because I had at the time 5 brothers, 2 Severe Dyslexic, 1 Mentally & Physically disabled, 1 Celerbral palsy ( he passed away at 5 yrs old) 1 who thinks he's gods gift to woman. LOL My Sis had ADHD. Daren had Never been round anything like that till he met me. Got dropped right in the deep end. I think thats why we have the problems NOW with the Outlaws because of Mark & his Asperger's. But what Daren's Mum wasn't expecting was the love she would have for Mark.
Ignorance springs to mind when I think of the words 'Normal' & 'Perfect'

I think the above says a little about Daren. However shall tell you a little more. Daren & I met 1st as Penpals. The reason being because of My Past. I had been in a Horrific relationship with a bloke, lets just say I am VERY lucky to be alive, sadly not as lucky as some that knew him. He got his comeuppances though. That's a whole nother story which I will happily tell now, but won't bore you with it now. So Daren & I started writing in Sept 93, we met in march 95, got engaged in 96 & married in 97. Now it hasn't been a easy road. Daren had to work hard & with me to show me that I mattered & could & am a Strong woman. However this hid a deeper issue for Daren, which reared its ugly head once we were married. 6 mths into our marriage Daren had a Nervous Breakdown. Doctors said it was because of his Family, more so his Mum. He had a Extremely Strict up bringing & wasn't given the chance of a childhood like most. He was taught that Perfection mean't everything. Now although we see the Outlaws & we do get on with them, things have been very bad & continue to. WHY? Because I am NOT what they wanted for there son. They wanted so much more, they love Mark to, but they can't cope with ALL that Mark has been through. They think they are 'Normal' (Ignorant I feel) & myself & my Family are 'abnormal' (We live our lives) We have been married 13 years on Monday 13th sept & I am NOT going to say it has been an easy road as I would be lieing. However I wouldn't change it for the world. Friends & Family say together we make Sense. We are both High maintenance. I have Struggled & fought beside Daren with his Nervous Breakdown & then his Severe panic attacks which coninue & can last days, to weeks to months. He has struggled with a lot of things, Mark's diagnosis being VERY hard for him. However we have won that battle with help from my family & certain friends. We are equals & we work together. Daren NEVER showed any emotions when it came to his Family, because everything had to be Perfect. It was weird. Because of my past I don't cope with raised voices. So Daren & I have NEVER shouted/Raised our voices at one another. We Talk. Daren doesn't belong to any mens support groups, because of his past he still struggles to open up & let people in when he needs help & support. However we moved to Basingstoke in April 2007, with his new job. He worked alongside someone ( Paul) & this person has helped Daren immensely to open up & believe in himself. Paul has worked alongside me to fight some of the battles that Daren has had taught of what is right & wrong. They no longer work at same place, both have started up there own private businesses. Daren & I work through an awful lot together because it has always been him & me, he never let anyone else in. However now this friend Paul is on the scene, he will go to his & they talk & it helps. So my shoulders no longer have to be so broad to carry everything. 

Hayles x

Nice & simple answer to that, 'NO'

Its hard work sometimes with Mark, there's no denying that. But All chldren are hard work & sometimes Good & sometimes bad. Mark just needs that extra bit of love & attention. In return I get an amazing son who I love more than words can say. Because the Goodtime always outway the bad.

Hayles x

Hi Hayles,

I just wanted to say I have been really interested reading your Q&A too and wanted to let you know that I think your words and they way you write will really be helping people who feel more comfortable reading posts rather than commenting or asking questions...thank you for sharing your story with us....I do have a question but I can see you already have one waiting so I will pop back later :0) 

Claire - Community Champion