My Reality - How do I cope?

Isn't it great being able to connect with other mums and dads who also have kids/teens/adults with special needs? With the click of a button it is possible to offer support, receive support, commiserate, whinge, rave and have a wonderful belly laugh.

I follow the blog of a lovely Irish lass called Looking for Blue Sky and she has posted the following for a blog carnival.... How do I cope?. I like the subject and it fits in with my latest theme 'My Reality'.

The following is a list of questions given by Rebecca, the creator of the blog carnival. You can find her at Here Come the Girls. By the way.... this carnival is for any parent and/or any situation, not just special needs.

1. What is it about your life which has made someone ask how do you cope?

I have a 13 year old son. He is autistic, non verbal, has motor planning issues and high anxiety. If I may be so blunt... this kid of mine is going to be dependent on me for the rest of my life! As for what happens when I have gone? Who knows!

2. What is the best thing about the situation?

To look on the bright side (pun intended!), the situation that I find myself in has forced me to become less of a perfectionist. I now take life very slowly and I have learned to concentrate on all the positives and celebrate every little success. My child has enriched my life!

3. What is the hardest thing?

The dull monotony of living with autism every day! We also love travelling and in order to follow our dreams we have to leave our son at home. This is exceptionally hard, however, our son is happiest at home!

4. What gets you through the day?

A cappuccino! :)

Seriously, I do need my own space and I love my spare four hours every weekday morning. I use this time to see friends, blob around the house, play with the dog and do household chores.

5. What would you change if you could?

As much as I adore my son, I really do wish that he wasn't autistic. I can't change that fact, therefore I blog to create autism awareness. I hope to help change public perception of children and adults with disabilties.

6. What piece of advice would you give to someone finding themselves in your situation?

Slow down. Take the time to really connect with your child. The relationship that you have with him/her is what truly matters.

Written in support of the blog carnival Walk a Mile in my Shoes

 This picture was taken in the Dean's garden at Winchester Cathedral.

In my opinion.....

I read a lot.... and I am not talking chick lit here! Each time I log onto the internet I am bombarded with articles, blogs, books, videos, links and groups that all revolve around autism. Sure, I can choose not to log on, however, I enjoy keeping up to date on what is happening in the big wide world.


There really is some interesting stuff to be found and I am not one to bury my head in the sand and say 'she'll be right Jack!". Although to be honest, I am a bit of a *skim reader*. I just don't have the time to delve deeply into each and every article and YouTube clip!


I want to know the latest autism news and read the reviews. It is important to me to read blogs that give a personal account of living with autism. I want to be involved in groups and to play a part if and when I feel like it. I want to hear about the happy, sad, funny and bad stuff out there! My three sisters will tell you that I am just plain nosey!! :-)


I have learnt a few things over the years!


There will always be division within the autism community. We don't stand alone here. No matter who we are, what we are, what we like or what we believe in, there will always be someone who disagrees with what we favour! This is to be found within any community. I call it *life*.


It is easier to sit on the fence (on the internet!).


My journey is MY journey.


My friend's journey is HER journey!


Don't judge another person's journey, even if what they are doing makes me shake my head in disbelief!


Think before reacting (this is taking me a while!!). Reminder to self: It is easier to sit on the fence and keep my mouth shut.


Be kind and understanding.


Be helpful.


Don't bash anyone on the internet. If I don't like what they say, I keep my mouth shut! The feelings of angst are really not worth it!


Save the debates and heavy discussions for people that you can sit down with, face to face. It is extremely difficult to *talk* without being able to see and read the non verbal language that is being expressed!


Only share the nitty gritty stuff with people that you really trust! (Yes, you know who you are!!).


Do not diss another person's blog. If it is not for me, I will no longer follow it!


Support each other.... on the internet, in our community, country, town, suburb or next door!


I could go on and on. BUT....  I have bought a new book that is being talked about over the net and it is quite the hot topic at the moment!

Shock horror ~ it has nothing to do with autism! 

Gasp.. it's chick lit!!

~*~

Sharing is caring!

Being a special needs mum can be a lonely business at times! I recall when Nick was a wee tot and I didn't know ANYONE who had a child with special needs. Also *back then*, our internet options were limited, support groups seemed to be few and far between. It was a very isolating experience, made even tougher due to the utter misery of trying to come to terms with my child's disability. How my marriage survived I don't know! I vividly remember having a glass of wine in my hand and throwing it very hard towards my husband and it smashing on the wall behind him (of course I wasn't really aiming for him!!!). It is easy to laugh now! :)


Today, connecting with other parents is a totally different experience. Keeping in close contact with family members all over the world has changed my life.  Gone are the days when I used to write to my Mum and then wait a month before I got a letter in return! Want the long distance cousins to grow up together?  Connect them through facebook and YouTube (with careful supervision of course!). 


For those of us who want to create awareness of our children with special needs, the internet makes it incredibly easy. Whenever I write a new post, I have in mind the *young mothers*. The mothers who haven't been on this journey for very long. I want them to be aware that life gets better! YES, there is still the odd blue day, however, post a simple sentence on facebook and have your day brightened by the support that is shown. OK, the comments may go a bit off topic and turn into compliments *blush* BUT it is incredibly uplifting to get that support. Oh, how I wish I had this ten years ago!

Mind you, I have been wondering if perhaps, it is all a bit narcissistic sharing my story and posting comments on the internet! "Narcissistic personality disorder is a mental disorder in which people have an inflated sense of their own importance and a deep need for admiration". OK, I am fairly sure that I don't have an inflated sense of my own importance! As for the need for admiration, well sure, it is nice to have people make nice comments! On behalf of all parents of children and adults with special needs, I need to say that there are times we need to call out for positive reinforcement and it helps tremendously to know that we have friends out there who understand what we are going through. Does this make me narcissistic, I hope not!


My facebook post today.......
The joys of having a special needs child??? I can't think of any right now! If you have any positive uplifting *joys* please feel free to post here!! :)




Tobys expressions of joy, love, and enthusiasm, are 100% untainted by any other feeling.


I've learnt to be patient? ... well more patient than I would have been :) and maybe not to have expectations - that way I can be thrilled with any / all accomplishments...


it can be a double edged sword but these kids are genuine when expressing their thoughts and emotions....we just have to get it all out of them, and they have a very funny sense of humour, hope you start to feel uplifted sooner rather than later


The friends you make.....?


And the people who love them!!


The happy times are so much sweeter.


I get to hear, mum I love you so much.....50 times a day :)


The innocence. . . .


 I know the lines from Finding Nemo off by heart, and when I say a line to Shaurav I always get the bestest smile... even in the middle of a tantrum!


 ‎... they say it (what ever it may be) builds character - OMW & what a character u are! Hang in there Di ♥


Know how you feel - is all I can offer Di...onward we go...oh and then we do have the little breakthroughs...the future is open ended...strength.


 Leaky duck session?


 Those rare moments where you see a miracle of development happen


 BIG hugs - am also having one of those days - bedtime needs to come quickly! Tomorrow is a new day!!!!


Di, I think I'm feeling as bleak as you! Eish!! Not sure if it's this house or the weather!


You've been able to teach us all so much! X


 Smile, watch a comedy...it's this dreary weather. x


Di, your are an inspiration to so many. Put today behind you and start a fresh tomorrow, if anyone can get through a tough day its you!


Hang on there. I'm thinking of you. Been there, done that and I know the times will come when the circle will come around again. It does. It's natural. Even we - the parents of kids of special needs are only HUMAN!


keep your chin up Di xxx your an awesome person never forget that xx


Children with autism don't pretend or lie, so you always know you're getting the real deal...that's something special and very hard to find in neurotypical people.


Meet other autism mums


 learn loads of truths about the world that 'ordinary' people just don't know


 Don't worry Di, u are a awesome mum and person. Just pray to GOD he will guide us and show us the way...when times are hard....


A special needs person teaches you to be humble


Those times when your kid does something you really thought he might never be able to do. Like just hanging out at a restaurant. Or joyously shopping with you. Or doing school work. We never take those things for granted. Hugs. 


All of the above............. and let's face life is and will never be boring :) (hugs)


Hope u feeling better xxx


 The joy and blessing of the opportunity to be a better, more patient, more self-less, more educated, more involved, more engaged and more connected parent, with all of my children!

Perspective....I would be a very different type of person if my perspectives were not widened by my own children, and our community! Truly *special needs* has taught me ( and us) so much for ALL of our relationships. Isnt it wonderful that now, we can look at a mom and her child, anywhere, and know that there can be so many things happening behind the scenes...This makes us truly understand relationships far more then if we never had this opportunity


Life is unpredicatable, it's little pockets of happiness and moments of beauty that keep you going xox


We all have those days, and apparently parents of typical children sometimes wonder about the joy of having just regular kids too... So this kind of thought occurs to many parents. Remember the joy of feet on sand? I wonder if you would be getting as many comments and support if you didn't have a special needs child?


 http://blog.autismspeaks.org/2011/11/24/be-aware-for-parents


They teach you more about you than you could ever teach them about anything. Look how much you have learnt....all those pathways of yours that would have otherwise been blocked...You are now very wise and an inspiration to everyone especially those that are only starting the journey.

Thank you so much, I appreciate every comment, 

you have lifted me up when I was down!

Tomorrow is another day!

xx

P.S. My dear friend who is going to be moving to greener pastures, I am going to miss you BIG time ~ we have been through so much together! Ah well, at least we can keep in touch via the internet!! AND, I am coming to visit! Lots of love xx