Saturday, 27 September 2014

The things we don't want to tell people

Any parent of an autistic child will have the thought 'I can't tell people that' whether it's because it's embarrassing, taboo, disgusting, or just too damn private!
But things happen! and keeping it a secret can become a reason for depression or isolation, and I feel that some people may think it is only them that have to deal with certain things and that others will look down on them as parent's/people if other people found out what their child actually does! but in my life and social circles I have found that these 'things' happen to others, and it is such a relief to be able to talk to some who understands and doesn't judge. maybe if we were more open it would become easier to talk and thus creating a greater feeling of acceptance and involvement with the outside world.

I myself have no problems telling people what my boys have been up to. I tend to use humor to help the poor innocent non-knowing people, my tales of woe and disasters. As these innocents might not be strong enough to deal with the truth! and it in turn with humor it allows them to have some form of interaction with my stories. And it diffuses any potential pre-conceived ignorant ideas of what it is actually like to raise autistic children.
So here is a list of 'Taboo' subjects parents may feel uncomfortable to talk about.

1 - POOH. my son has a hatred of pooh, and whenever he does a pooh and we don't notice, he will try to remove it with his hands, and then he will try to get it off his hands, and then me and mommy have a lot of cleaning to do. clothes, carpets, walls.

2 - POTTY TRAINING. (see No 1 for consequences) my son is not yet potty trained at 5yrs old and shows no sign of improving any time soon, he wears a nappy almost 24/7. Get over it!! I'm not asking you to change him!

3 - DINNER TIME. hahaha this one is always a treat, we have to make up 3 different dinners for our children every day (and have a back up plan if plan A doesn't work) they eat at random speeds, anything from shoving everything in their mouth in one go (yes, better the wipes to clean up after this one) to placing every item off their plate into intricate patterns on the table, then walking away for a suspicious amount of time, only to come back later to eat everything. Not forgetting the 'DUCK flying potato' alarm!

4 - SPITTiNG. we have had to deal with this one on a random basis (thank god) as it is pretty disgusting, It seems that holding and swilling juice or phlegm in you'r mouth is a great thing! but what do they do when they have had enough fun? Yep! that's right, it just comes out, wherever they are whatever they are on. it gets even worse when they try to suck it back up! Oooh fun. speed and a keen eye is key to tackle this one.

5 - SPEECH. Both of my boys have had problems talking (connor can now talk, he started about 4/5) But Aiden is definitely non-verbal. strangers and new people we meet will say to him (innocently) 'hello, you look happy, whats your name?' and its up to me or mommy to tell them he cant talk! They mostly reply with 'oh I'm sorry' Sorry? what for? you didn't do it to him! It's just him, like he has blonde hair or blue eyes, nothing for them to be sorry about, we can communicate n a way that we can mostly understand. It's o.k.

6 - TANTRUMS. They happen. and we know how to deal with them(ish) They can happen anywhere, and They can be BIG, but we learn from the triggers and try to not let that situation happen again, especially in public places where it can get dangerous. Who gives a f&*k what other people say to each other and stare in awe as to how awesome I am as a parent when I get the situation under control, and do not turn to the ways of 'bad parent's' by hitting and swearing at my child like I hate them and only have them for the money! (yes  just had a dig at those unworthy parent's)

7 - SCHOOL BUS. Aiden gets picked up and dropped off outside our house every week day of the school term time. This is a blessing not a stigma!

8 - RUBBING. erm? well? oh? ah?.........this is probably my most feared public display of sensory exploration! as it can't be seen in any other way than my son is 'spanking the monkey' but he does this outside of his clothing, and not the way that teenage boys do! He is only creating a physical sensation to himself when he gets bored, irritated by an uncomfortable nappy, or lack of other stimulation's. It makes everybody feel uncomfortable who witness it, and he gets very angry when we stop him (he doesn't understand why it is wrong) as he is only trying to feel something that he can identify with, The things we do to distract him from this are, dancing, singing his favorite songs (that involve holding his hands for actions) and just offering another type of physical stimuli.

9 - MY HOUSE. My house has been adapted to make my children safe and secure. Yes all of my doors upstairs have locks on them! after you have stopped the bathroom from flooding the entire house and caught you'r child from hanging out of the window by his ankles, and removed toys and teddies from the toilet, then you can say that is an extreme and oppressive way of home management!
Also, my carpets are stained, the wallpaper is missing pieces, and I don't have shiny ornaments on display!! But it is clean (unless you come at that perfectly timed moment that everybody seems to)

10 - MANNERS. As much as you try to teach you'r child manners, when it comes to situations like visitors coming into you'r house, they will go straight for the 'What have you got for me? and give it me now!'
And Connor has the 'The truth is the truth' way of life, like the time he went up to a complete stranger and told him "you'r belly is fat" and "that woman has a beard! is she a man?" these situations make you want to curl into a ball and disappear, but let's face it. It's only the boundaries of society that stop us from saying exactly what we really want to, and given half the chance we would!

Wednesday, 24 September 2014

Thank you x

Throughout the life of a parent raising an autistic child, The support network around them can be the most helpful and inspirational people in the world. Be they family, friends or professional, And they sometimes don't even know how important they have been, so now is the time that I give those people their own recognition for the support and help they have given me and my family.

1 - Grandma x for being the only person who can take ALL 3 children away from us for overnight sleepovers, and her unconditional, never judgmental grandma love for her grandchildren.

1 - Nanny and Grandad x  For taking the children on days out and making their time fun. and for the efforts in trying to understand a new way of looking at life with autism.

1 - Joel x For taking my boys way of life and turning into an excuse to spin them up in the air and play the fool every time he visits.

1 - Katie and Anthony x For being the Auntie and Uncle that never treat my children in any other way than loved, and never judging the differences.

1 - Thomas and Fiona and girls x For welcoming and accepting and getting on the trampoline to act the fools like nobody cares.

1 - Tina and Michael and Jamie x For listening to me and then acting upon my words to do what they can to help and support. for coming up with ideas to help my boys.

1 - West Heath Nursery and ALL the staff x for being the unrelenting machine of power, who helped us put through Aidens diagnosis when the doctors showed no interest in our opinion, and for going out of there way every day in their attempts to teach themselves about autism and how they worked with the other children and families. And how they put themselves out to help out Aden when he didn't have a school to move to, when they opened their doors for him to stay on longer than they had to, And for the love and care they showed me and my wife constantly. And for meeting with Sue the head mistress dressed as a giant cat (it was for themed day, and made a few giggles) And........ you name it, they did it Awesome praise for this nursery.

1 - Tesco cashier ladies x who never once questioned when we said "and this mostly eaten pink frosted doughnut" at the checkout.

1 - Parents at the school x for those who ask questions, and those who have helped out on school outings.

1 - Charley x a boy in my daughters class who helped the other children just accept the differences as if its nothing.

1 - Keira x my daughter, for being the best big sister any parent could hope for, her love and understanding of her brothers makes me so proud I cry.

1 - Miss Foster x For taking the time to understand and be pro active when it comes to helping Connor through his emotional struggles at school.

1 - Miss Yeoman, Coach Richard x for being the extra support Connor has needed and the individual approach they have took to work with him on a personal level.

1 - Miss Callow x for Being Connors favorite teacher and pushing him into the academic side of schooling.

1 - Friends - Emma, Rhiannon, Mark, Nick, Sam, Dib, Ian, Alan, Jo, Shane, Bex, For helping us find the humor when we tell of how disastrous our days have been.

1 - Hayley x for being a co' autism mother and sharing stories of joy and woe, and letting us know that whenever we need to vent, she is more than ready to listen and share.

1 - School bus ladies x for being there every morning to welcome Aiden on, and for every afternoon when they see him off safely.

1 - Facebook friends x for enjoying my stories and contributing there own tales of life with autism.

Thank you all x

Friday, 19 September 2014

Keeping the peace.

Autism has brought about a level of stress and frustration to my household that I never thought possible when me and my wife first had the discussion of 'making babies' but we went ahead and did what lovers do, 3 children later.
We had no idea that our second and third children would be on the spectrum (we didn't even really know what 'the spectrum' was at that time....we do now)
So time is moving on and we notice that the things we thought we'd be doing as a couple/family has not exactly met our expectations. But throughout the development and discovery of our two boys ASD diagnosis and the understanding of how they are, We have adapted our relationship with each other to both care for the children and each other.
We have made some changes in ideas, and compromised what is decent alone time.
Throughout all the struggles and stresses we have remained a very loving partnership (arguments over who's turn it is to get up at 02;35 to try and settle down our son don't count)

This is a list of some things that I think have helped me and my wife maintain a loving (romantic..ish) life.

1. Expectation - Whatever you think you wanted from a romantic night together with your partner, forget it, and just enjoy the fact that you're not on clean up duty (even if you are just watching crap tv together on the sofa)

2. Alone time - unless your children are at school or 'definitely' sleeping in bed, then don't even bother. But if they are then this is the perfect time for you as a couple to do what you've been dreaming all week for.....NOTHING and that's fine.

3. Onesies -  Not a personal favourite of mine, but at the end of a day fighting and battling with getting dressed, and dinner, and ignoring stupid comments from strangers, This is what she needs to feel 'Aaahh relaxed and happy'

4. Compliments - no matter how small or insignificant you think things might be, Always say to them how well they did and how proud you are of them for doing it. i;e I love the way you managed to clean that one corner today, or, Thank you for letting me sleep in today. (the big compliments will be better received when you notice the little things)

5. Effort - even if all it is a touch of eye liner and wearing matching socks! these are the things that let you know they are not dressing for the kids.and should not go unnoticed!

6. Conversation - anything that can not involve autism is a winner (we recently had an amazing sharing of minds over the best recipe for cottage pie) It may seem silly, but it let's you know that that you're still human.

7. Taking turns - Set down a basic rule that taking turns is natural thus avoiding the 'It's your turn' battle. Fair is fair.

8. Baby sitters - A mystery to most parents of autistic children, But if you find that ONE person who you can call upon (Grandma, sister, friend, whoever) then this should be treated as a special occasion indeed. this where you can go out, or maybe just know that you both can sleep in.

9. Humour - Finding the funny side of your day is probably the most important thing to stop you both from gong insane.

10. SEX - yes, you read it right, It doesn't matter if it's a middle of the night silent entanglement or an all out screaming shouting (the kids are asleep aren't they) letting go of tensions. this probably the thing that lets couples know that they are more than just parents, and that they are in fact lovers in a relationship with each other. and that they still enjoy each over for them! and not just for what they are as parents.

(this list may be adapted for all parents, but for my experiences it is the way I maintain my loving relationship with my wife and balancing that with raising autistic children)

Friday, 12 September 2014

Autism and the evolution of housework phrases.

As a parent raising autistic children my life has changed and so has my view on certain things.
Here is a list of autism parent views on housework.

1. Hey that's nice and clean.

2. I'll pick that up in a minute

3. That can wait till after dinner.

4. Where did all that come from?

5. Get the bin bag!

6. I'll face that in the morning

7. Wheres the bleach?

8. Nope, we'll just have to buy a new one.

9. Your turn, I did it last.

10. I only just cleaned that 2 minutes ago!

11. Who left the soap powder on the low shelf?

12. What is that?    No don't tell me I'd rather not know.

13. This is a two man job

14. Please don't move, touch anything, breathe, we've got guests coming in 5 minutes........crap! you moved!

15. Lets just move to a new house.

Saturday, 6 September 2014

My autistic son will probably never leave home

There are things in a parents life that they take for granted.
Some of those is that their children will grow up, get educated, get a job, and move out!

But I have come to terms with the fact my son will probably never 'leave home'
At the moment he is 5 years old severely autistic, non verbal, and behind in most of his developments, He needs 24/7 support and care. He is Hyposensetive and demands large amounts of physical stimulation to get any form of satisfaction.
Jumping, on beds, on trampolines, on me
Dancing (mostly by being held and bounced)
Tickling (hard enough to bruise any other child)
Eating (everything from ice cream to mud)
Making loud noises

He has no concept of personal safety, And this makes the outside world (also the safety of home) a very dangerous place. He will try to touch flames, swallow what looks interesting, climb up anything, run and chase something that catches his eye (cats, sweet wrappers people etc) when upset, he will fall to the floor and roll screaming (this has happened on a main road before)
He is very loving to me and his immediate family, He will hold our hands when out, and be led safely.
He feels safe with people he trusts and knows, but he can also take a shine to strangers he see's as safe! (this is a bit worrying)
He thrives on routine, and if that routine is broken then chaos will ensue, e;g If his school bus is 2 mins late, he will scream and shout and run up and down the lounge, banging himself into walls and windows to show he is distressed! (this has made our patio doors very wobbly and in need of replacing)

All of this and many more incidents have made me and my wife have the discussion 'what will we do if he never improves?'
This was a short and easy question to answer.
We both agree that, He's our son, we love him and we will always be there and do what is needed for him, The thought of putting him into care is something we both are against (even as he grows older and gets stronger) We will just adapt to his needs as they come. We have looked and researched as much about autism as we can, but living through it has been more educational than any book can be. And from what we've researched the only conclusion is that he will be better off living with us (forever)
I have long since thrown away the ideas of a relaxed retirement and am now planning for how best to serve my sons needs. I see articles from parents saying how hard it is to let their child go, but I could not see myself doing this (yes I know, things will get harder, but my stubborn mindset is fixed)
I have seen too many horror stories in the news about vulnerable people in care for me to feel even slightly convinced that they will be able to offer a better life for my son. I may be over protective, naive, and scared. But, that is how i feel and my determination to be the best parent to my children that they deserve only leads me to this conclusion!
I am and always will be a 'family is important' man. I will do anything to keep my family happy.
I have thought about and planned for the worse case scenario, and if that doesn't happen then I will be thrilled. The future of my son is not yet written and he could take massive leaps forward, but if he doesn't then I am ready! I will always be ready, for that's my mantra.