Monday, 2 September 2013

Hey! How Are You?

Just checking on my readers who have children with special needs.

Hope you're all doing well.

I know it's a thought time, this back to school malarkey, one that we could both do with and do without.

The rest will sure do us well, but the anxiety is something we could do without.

So, why not, when that first day back at school turns up and bites you on the bum. Have a treat.

Why not treat yourself to a pyjama day? Or maybe go shopping and treat yourself to a lovely new something! Or even hop into a coffee shop and have a peaceful cup of something and a flick through a magazine.

Don't forget to pamper yourself! It's not easy being a special needs parent!

Saturday, 31 August 2013

I Had A Dream...

I had a dream...when I was young, of being a parent.

Being a parent of three children.

It really didn't matter to me the gender of the children...I just wanted three children.

Those children to grow up together, play, get older, do well in school, achieve the best that they could in life, meet someone nice, get married, then, grandchildren would come along...

I had a dream.

All you want as a parent is for your children to be healthy and happy...

It's happened again.

Our third born little rascal is also affected by whatever genetic disorder has embedded itself into our other two children.

A routine hospital appointment with our rascal's consultant at our NICU showed that there is no tone in third born rascals arms and legs.

A routine appointment with rascal's physiotherapist has resulted in little rascal requiring piedro boots, just like our other rascals, a mobility bench, and a frame with body brace, all to try and assist with building up tone. Littlest rascal is also too small and too quiet, so, portage is also being drafted in just as our other two rascals have received.

It's hit me hard this time.

The heartbreak that not only have we gone through it with our first born, the incredible news that our second born was also affected, but the unbelievable, overwhelming news that our third born is also going through it, is really hard to take.

So, here starts the change in our lives. 

We realise that we are in this for the long haul, and now that all three of our children are affected with delayed development, which involves mobility, gross and fine motor skills, and speech and language. Along with autism in rascal #1 and #2.

Recently, I have been asked a number of times..."how much more can you take?"

There's no answer to that. As a parent, you have no choice but to be there for your children, to be their strength, look after them and their needs, fight for them, and be their voice when they need you to be. 

Its a given rule as soon as you fall pregnant, that is your job description. 

There are no perks, days off, lunch hours or core working hours. All of their wants, needs and requests are your responsibilities. You have to answer to them, care for them, and just be there.

As a special needs parent, it all comes naturally...with the added bonus of exhaustion, stress and worry. Its a 24 hour job.

Even when we have a break away, our minds are with our children, wondering if they are ok, worrying probably unnecessarily about them. It's not really a break.

Hospital appointments are going to rise in number, involved specialists and professionals are offering fabulous support, and our job, as parents is to keep our sanity, and our rascals happy.

This is hard. 

We are exhausted physically and mentally, but knowing the support that we have, and will have from family and professionals, we will make it through...we have no choice but to make it through. 

We will do it mostly with a smile on our faces because, although our children are affected as they are, they are our world, they are gorgeous and we wouldn't have imagined our lives without them.

I will, again, ask you to look at some charities that are close to our hearts: 


Wednesday, 21 August 2013

Action Medical Research

Charities are frequently not far from the heart. Ask anyone, and they'll tell you their charity of choice without a hesitation.

Be it through direct debit, or simply a coin in a drop box, we all support our charity in our own way, obviously, the more given, the better, but whatever can be given means so much too.

I had, and still do have causes that I choose to support, and this one has come to the fore for our family.

Action Medical Research.

This is a charity which is raising funds to help research in various areas of medical research. The results are outstanding so far, and it really is a charity close to my heart.

Although, I have just come across Action Medical Research, because my three little rascals are being investigated for a rare genetic condition, the charity itself has been going since 1952, and it really needs to be promoted more in the UK.

Please have a look at the link above, and if you have any children with disabilities, check the research, there may be information for you.

And please, do pass the word on.

I will be posting more about Action Medical Research, so, come on, spread the word......

Monday, 19 August 2013

School Holiday Blues...You Know What I Mean?

It's that time of know, when mums and dads across the country are singing that song

"It's the final countdown! Da da da daaaaa da da da da daaaaa"

And yes, I am also singing it, but with a huge dread, and with a more negative meaning!

I have had lots of mornings of peace, and happiness. Of no stress and no hurries. Of a 'tomorrow will do' attitude.

Then WHAM before you know it, it's that time again....

"Is is school tomorrow mammy?"
"No! Say no!"

Now, before i go any further, I know that first born rascal is VERY happy in school. It is the most fabulous school we have ever come across and we are more than content that when said rascal is in school fun and games are had. I have seen it with my own eyes.

It's the separation thing. It's awful.

It's the getting rascal up in the morning, uniform on...fighting my way through it.

It's the breakfast in the same order at the same temperature at the same seat...followed by the toast, which has to be timed for when the taxi pulls up.

It's the getting shoes on at the correct point, sitting in the correct chair, and the coat fastened up, even if its sweltering. It just has to be fastened.

Then the wrestling of the child into the taxi, and finally topped off with the tears. Those huge, heart wrenching, uncontrollable sobs, with the huge fat hot tears hurtling all over.

It's hard going.

I just love the holidays. There's none of that. It's great.

"Is it school today mammy?"

Big smile.

However, having said that, once all are delivered to various ports of call...I can't complain about the peace and quiet!

Wednesday, 7 August 2013

Thank Goodness For Bubbles!

Bubbles are my new best friend. I have to keep them in every room in the house.


Because they are a fantastic distraction to children who are slowly becoming over stimulated. My rascals can become out of hand if left in the incapable hands of over stimulation, as can the healthiest child, with no difficulties, but throw in the heady mix of ASD and you could be on the Big Dipper about to plunge to the depths of despair!

This is where my pal, bubbles comes in!

When you see the mood change from happy little people to happy little people on the edge (rather than Shrek's donkey on the edge), just blow some bubbles into their line of vision, and just watch!

It's quite amazing. The flapping will slow, the eyes focus on the translucent air pockets floating by, looking desperately for the next one....the biggest tip is don't be slow! Keep it up and you'll see how you can reclaim the control in no time.

This works everywhere! I keep a small bottle in my bag too for when we're it and be careful in restaurants though, I don't now how happy the other patrons will be to have bubble popping into their lasagne!

And, do you know, I also enjoy them, they really are quite therapeutic to watch, imagine if you could just put some of your troubles into a bubble and blow it away...

Sunday, 4 August 2013

Why I Like My Blog Background...

My blog background, you will see is a plane, soaring over the clouds.

I like it, alot.

Mainly because it reminds me of holidays, and getting away from it all, but on the other side, it reminds me of teaching our first born, (and attempting to teach our second born) makaton.

The sign for holiday is placing your pointing finger and middle finger to the left or right of your brow and curving it away in a sort of strange salute. This was described to us, to help us remember, as letting your thoughts fly away...which is a holiday.

Makaton is so sensible!

I have often thought that ASD is a little like the mind taking a long holiday.

Sometimes my little people can be very much with us, in the present, then they go, on the holiday that seems so easy for them to go on.

If only we could do that for real's free, saves your sanity, and you can stay as long as you wish. I would miss the pool though, and the lovely evening meals.

So, I thought that the plane in the clouds was quite apt for me, and my little people...hope you don't mind it!

Autism? You've Got To Be Pulling On My Leg!

Well, along with my little rascals, I am extremely fond of Despicable Me, although, we've just started to get into films, and have only watched the first one. I just love the part when the orphan girls are knocking on the door, selling cookies and Mr. Gru says "You've got to be pulling on my leg!"...or something...sleep deprivation does this...memory vanishes without a trace!

Anway, that phrase is used quite often in my language, and it's a good phrase to use, because it makes me chuckle...a lot.

That's how I felt when we were told that our second born was showing autistic traits.

We noticed quite early on in our second born's life that routine was important, that certain toys were required more often than others, that a ride in the car needed five toys to go along too.

No....I didn't want to think about it.....

We noticed that vehicles needed to be lined the extreme. It was like a motorway gridlock in our house and we are lucky to get through so many years without any leg breaks due to falling on the gridlock.

Still didn't want to think about it!....

We noticed that certain foods wouldn't be touched, we noticed loud noises like the hoover and hand dryers were terrifying. We noticed that coats needed to be fastened up in the hottest weather, and that even thought the car was like a sauna, the windows needed to be up, and the A/C had to be off.

....I know, I know....but no....surely

We noticed that when over stimulated, flapping occurs, word repetition occurs and the onset of a meltdown is catastrophic.

....So, I guess, we kind of expected the diagnosis...does it make it any easier? That would be a 'NO'.

Autism is complex, difficult to understand and exhausting.

Being told that we had to deal with ASD in our child made us want to protect,wrap up in cotton wool and shield our child from the world. Worrying that the 'nasty' people out there would give them a hard time.

As it happens, the support has been tremendous, which has enabled us to have a more positive outlook on ASD and also, be a support to others who have had trouble coming to terms with living with is to be embraced...

...and no, I'm not pulling on your leg!