An Open Letter to Parents Whose Children Don’t Have Autism…

I saw this posted on one of the Facebook pages I joined

https://www.facebook.com/singlemotherswhohavechildrenwithautism?ref=ts&fref=ts

 

And it really hit home because I know all about these melt downs we had one only today from Ali and that involved doors being kicked in, screaming, shouting and things being broken.

My friend’s sister has four children, ages 14, 13, 7, and 3. This woman’s 13-year-old son has a severe form of autism and a mood disorder with psychotic episodes; doctors have told his parents that their son is a very unusual case. As a result, life is extremely challenging for the entire family. Because their son is prone to frequent and uncontrollable outbursts, they’re all having a particularly difficult time in the condo complex where they moved last year for his mother’s job as a biotech scientist. Her heartbreaking Facebook post, which she allowed me to share, strikes me as the kind of thing every parent should read, particularly if he or she doesn’t have a child with autism–or any other disability or mental illness.

 

“I would like to say something to those people in our community who look at my husband, myself, and our disabled son in disgust or shout out your windows for us to just keep him quiet. He is a minor inconvenience to you. You get to go back to your lives, travel as you please, eat what you please, and go about your merry way. Imagine what it is like for us, constantly struggling to keep our son safe. Imagine what it is like for our other three children, whose friends’ parents won’t allow them to come over while our son is home, who are constantly told they can’t go places because it’s too difficult, and who often can’t make their needs heard above his yelling. But most of all, imagine what it is like for our son, whose level of anxiety is so great, whose suffering is so enormous, that he is driven to cry, driven to scream, driven to bang his head and bite his arms and legs. Have you ever in your life felt so much pain that you were driven to that? Be grateful for what you have, for being born with a normal functioning brain, and maybe you would consider being helpful instead. We could always use a home-cooked dinner, an offer to take one of our other children to a movie, or just a smile of support.”

The Dreaded Lurgy!!

What is it with kids and their ability to pass on their germs with such ease. Ever since she moved in with us Amber has had a constant cold, mind you even when she was little they were always sniffing and coughing. she gave it to Ali first and he was really bad now he has got over it I have now contracted the ‘dreaded lurgy’ ie I have a sore throat, headache and that lovely feeling like someone is sitting on your chest!! this morning when I woke up I felt like my lungs were being squashed flat….

I really feel like poop. The problem is this is the same time as last year when I got bronchitis or pneumonia depending on which doctor at the time you were listening too the last one who finally gave me the right antibiotics and with the Prednisolone decided that it was indeed pneumonia and I should of been in hospital anyway as I was saying the problem is I am terrified of getting it back again, I have distanced myself from anyone with germs.. the boys have been fine .. Now the germs have entered the house and here I am with the Lurgy..

 

For those who don’t know what The Lurgy it. . I will explain, it’s not a cold and it’s not the flu’ but something in-between. A general feeling of not-wellness, often manifesting as snotters and croaky voice, a cough that can be “productive” but also dry. Aching bones, zero energy and a desire to crawl back into bed and stay there. It ebbs and flows like a pestilential (is that even a word?) tide. You think you’re on the mend and then it’s back.

I have the lurgy, and the worse thing about having a lurgy is that I know full well there are plenty of things I can dose myself up with on the market but non of them really work and I have to be careful what I take because of my asthma. So most of the time its a get on with things but feel terrible kinda feeling…

 

Unlike Man Flu this means I still have to get on with everything from getting the kids up and off to school to doing dinner, washing etc.. picking kids up and helping with home learning.. you know .. Life goes on!

 Although this may be the reason why I am taking everything to heart at the moment..  I feel crap!  Its one of those I want my mummy feelings but she’s not here!

 

I know one thing I am going to go to bed early if I get the chance!

When did you lose the Magic of Christmas?

Wow December 1st and Christmas is almost upon us!

When I was a kid Christmas was never really anything special to be honest..
We had a small tree but I don’t remember many decorations around the house, Until of course I got older, My dad got higher up in his job and had to entertain more… Of course then there was the Bosses Christmas party that he had to hold for the staff working under him,  Then we had a big tree and loads of decorations.. It was all for show!

When it came to presents when I was little, we never got much, that is to say not in excess like the kids do now… we had one or two things to unwrap or a big present and that was it… My brother who was at boarding school most of the time was usually the spoilt one! I guess it was to make up for the guilt my parents felt of him not living at home.

Anyway:
When we were living in Germany, I can remember finding a bike in the cellar about the end of November time ! Now this was obviously a boys bike so not mine. I was just about to go running and saying I couldn’t wait to tell my brother Paul about it when he came home from the Christmas holidays, when my mum stopped me. She explained that because it was so big Santa had dropped it off early because it wouldn’t fit down the chimney, but I must keep it a secret so my brother didn’t know he was getting a bike for Christmas!
I guess every other kid would have believed her and left it at that…
No not me… I decided that if Santa was really that busy at Christmas then he would have Used his brain and left the rest of the presents as well, after all no point in just dropping off one…
So I hunted…
and Found!!
yep there was a small purple teddy upstairs in my mum’s wardrobe that played Brahms lullaby.. and a Barbie doll, and a few books.

And then the next week I actually saw my mum picking up a book in the shop and lo and behold my brother got that as well to go with his bike.

Now bearing in mind I was about 6 when my parents came back to the uk after a tour in Germany I guess the magic of Christmas was spoilt for me 😥
Because on Christmas day. there was no surprises at all. What I saw when I had been searching,  is what we got……. And it didn’t take brain science to work out that there was no such thing as Santa and my mum and dad were the ones who got the stuff…
I mentioned this to my mum and dad and yes they said it was them after all and that i was now old enough to understand… blah blah blah…

Big mistake really as from then on … of course everything I wanted I was told cost too much… I never got a new bike in my life I always got hand me downs… I don’t actually remember any other Christmas present.. of course I must have got bits but nothing memorable…

It was then I swore to make Christmas Magic for my kids… I slipped for a few years due to major depression but thankfully Both Alex and Ali were too young to understand.. Now I am trying to make it as special as possible… Not easy when Allan is so Bah Humbug about the whole thing 😦

30 Blog posts Picture Challenge Blog 8

Blog 08 – A picture of any relative/s you wish

 

 

My mum sadly no longer with us.. 😦

Here she is holding the twins when they were a few weeks old

Ironic thing is she was born on the 1st July which is my youngest son Ali’s  Birthday and my 1st Grandson Rivers Birthday

And she passed away on the 24th July which is my twin’s Birthday..

 

1 July 1934 –  24 July 2005

The Grandson I will never meet :(

I got news through a friend the other day that my oldest daughter had a son the other day of course they don’t know that i know this and if this friend ever got found out that she had passed this information on to me or sent me these pictures then no doubt this will be the last time I will ever hear anything again.

I feel devastated, gutted, and very sad, I have spent hours and hours in tears:(

but at the same time I’m so proud of my daughter  and happy for her.

None of these feelings make any sense to me at the moment.

I miss my kids so much but just having this one little glimpse into their life at least i know they are ok

well i know my daughters are.


I know i will never meet my grandson but at least i know what he looks like

now the strange thing is

My Mum was born July 1st 1934

My Son Ali was born July 1st 2006

And now my grandson River has been born July 1st 2009

maybe there is something in that… funny eh  a third generation of a family all being born on the same day.. And my daughter doesn’t even know this.

My two lovely little boys are uncles…. they don’t even know that they have older brothers and sisters.  I haven’t told them because I cant face the questions they may ask… I know one day when they get older I will have to explain but for now ignorance is bliss….

My Daughter Sarah holding her newborn son RiverMy Daughter Sarah holding her newborn son River

River born 1st July 2009River born 1st July 2009

A Strange Sad and Expensive week!

In the last week

It has cost us fortunes lol

The galaxy died on Allan so after a tow home by the RAC it was discovered the head gasket had gone… we called around and to fix it would cost about £500 so after a bit of debating we decided to see what other mpv’s were available for that kind of money…   we found a totota estima for £500 just needed taxing in very nice shape.. Allan has put a few dents on the galaxy and scratches and ruined the interior. filthy and trim missing etc so yes i agreed we would get the other car instead..  we buy it…. problem one  getting the insurance sorted  it’s an import…. my insurance co don’t insure it but the broker found another firm that would it cost a little more than the galaxy but at least it’s still fully comp.  sorted… now taxing it of course we couldn’t tax it until the cover note came.. now this is where the insurance co were fantastic… the cover note came the next morning so off i set to tax it… all sorted even sent the old tax back on the galaxy it only had one month so taxing would have been an expense we would have had to pay out for the galaxy anyway.   then getting rid of the galaxy… no if we had somewhere to store it I would have said sell it for spares or repairs…after all it’s not long since it cost us over a thousand to have the transmission re done and a new windscreen put in only a few weeks ago.  but we don’t so it had to go  so off it went to the metal breakers along with the metal climbing frames and a huge box of old hard drives and every other scrap bit of metal lying around :)

total result back £150  and then another £50 for the wheels and tyres so in actual fact the new one has cost us £300  so it did work out a lot cheaper than fixing the galaxy and we have a lovely looking mpv again (until Allan does something to it lol)

Allan also  fixed the knob on my car radio/cd player at long last..  that’s only taken him since last october when i bought my car to sort out… took all of five mins…

Ali has had a little bug not sure what it was he just had a day of not eating anything and his chest was really bad.. neither Allan or I got any sleep on sat night as we sat up watching him as he struggled to catch his breath and was coughing. thankfully i have his inhaler so managed to sort it out without a hospital visit ok once he was settled we decided to keep an eye on him anyway… managed to get him to eat something on Sunday even if it meant me going to the garage to get him his favourite cream cakes lol



I was thinking this morning that three years ago i was sitting in a panic… Allan had gone out and about 20 mins after he left my waters went… bearing in mind what has happened in the past with Michael and the fact that it was 3 weeks before his due date i was getting in rather a state… Allan rushed home, a friend baby sat Alex and we got up the hospital asap…. no signs of labour but because of my previous history they decided to keep me in…  it seems like yesterday now… I can’t believe that my baby will be three on 1st July,  then again I can’t believe that Daniel my oldest will be 24 tomorrow… this is the time of the year when depression really starts to hit me if im not care full.  I miss my son and i dread his birthday coming up… its another birthday i wont be around for another one ive missed.  that makes 6 or 7 now even that makes me sad that I cant remember the exact last birthday i could spend with him of course i could work it out but not actually remember….

Even my baby Ali’s birthday comes with sadness as it’s also my mum’s birthday he was born a year after she passed away on her birthday so while we celebrate Ali’s third birthday i cant help but feel sad that not only will he have never of met my mum it should be her birthday as well,  and on the 24th July not only is it my twins birthday who will be 23 its also the anniversary of my mum’s passing  so not looking forward to that either…  another two birthdays i will miss and i miss my mum…. hence my feeling down in the summer……. I try not to let it get at me and i don’t mention it to Allan now  I find the best way it to have a good cry when no one is around and no one knows how sorry im feeling for myself… i have to keep on, life has to go on… I have to be here for my boys..


And to top it off a crap end to a crap week last week Michael Jackson died…. and Farrah Fawcett while i did like Farrah and loved the film private Benjamin It’s the passing of MJ that has kind of shook me the most… I used to be a great fan when i was younger… hence my first son’s name Michael while Im not sure about the person he became and the wacko jacko stuff… there is no denying the man was an icon who had produced excellent music and was a great showman and dancer… it is a great loss not just to the music industry, entertainment industry but to millions and millions of fans world wide.  the only other person i can remember whose death  had such an impact on the world was Elvis

very sad news….