#1
Posts: 7,906 | Threads: 3,211
Joined: Oct 2009
Reputation: 11

  • Administrators
1) Tell us about your Childs disability and age?
Grayson is currently 1 week shy of 20 months old. His disability is hard to say as he is still not formally diagnosed, but basically he has brain damage, low muscle tone, failure to thrive and Global Developmental Delay to name but a few. His Paed diagnosed Cerebral Palsy, where as he neuro-muscular specialist says they will one day find his true condition.

2) Tell us about the day you got the diagnosis?

Hard one to answer really as there is no true answer to this. I don't think I shall ever forget the day after he was born as I knew thats when the problems started, he didn't eat for the first 18 hours of life and then when into shock and suffered fits for over 6 weeks.
Unfortunately this was all ignored and put down to Jaundice, in my heart I knew something was wrong and finally when he was 4 months old and he stopped breathing, only then did they start doing tests.
On the day of his 1st MRI (which I had to order) they came and asked my husband and I to come to the office, where they showed us a bleed on his tiny little brain. The bleed was very small the size of your fingernail but it looked huge in comparison to the whole picture.
Since that date over 100 conditions have been thrown at us, each day of tests as frightening as the 1st.

3) Who was the first person you told about your Childs diagnosis and how did they react?
I can honestly say I am not sure who was the 1st. We have a very large extended family and they would all text and ring every day.
I remember telling my Mom, she just said everything was fine and no matter what Grayson was the most special baby in the world.
My Dad got angry, then upset, questioning every little detail and then came to the hospital and questioned the doctors. My husband seemed to ignore what was said, like he had not heard and it was not happening.

The day it all changed was our first appointment with our Developmental Paed, I shall never forget that day, we sat down she read Grayson's notes and then clear as day said "Now, you clearly know your son has Brain Damage and that will never be cured", no one had ever spoke so directly to us, my husband came out crying it was a turning point for us all.

My Aunt choked and cried when I told her a week later, walked away and then 5 minutes later came back hugged me and said we are all here for you all. I realized then life would never be the same.

4) What is your Childs biggest achievement to date?
Biggest achievement is hard for us, Grayson is still very young and greatly delayed. I have learnt in my short time as a parent to a special needs child, that every little thing is a HUGE achievement, but as the saying goes in our house 1 step forward 2 steps back where our little boy is concerned. I posted a few weeks ago how Grayson had managed to learn to sit unaided, so if you had asked me then the answer would have simply been this, but now he can not do this. Grayson is an achievement in himself and every thing big or small is special to us all.

5) What 3 tips would you give to parents of disabled children?

1) Never look to a future - your future is tomorrow and possibly next week. There is no year or 5 in advance, this way you never feel disheartened by future goals, you only feel pleased by everyday successes.

2) Parent knows best - we are lucky our Paed practices this, but always go against doctors if you know somethings wrong, as you know your child best.

3) Take breaks for yourself when you can, be it 1/2 hour or a whole night try to do it once and a while because much to what a lot of people believe, parents of disabled children do have it harder and the rest will revitalize you and bring happiness to the whole family.

Sneakily 4th - I tell all parents I meet to join this forum, as all you guys and girls have been a bigger help than any health care proffesional I have met to date.

6) What has your Childs disability taught you and how has it changed you?

That the world is full of very shallow people ( I may have been 1 of them myself) and that I am now more tolerant than I have ever been. Its a cliche but life is too short, I honestly do not care at all what people think of my son, I just hope they treat him with the love and care he deserves.

It has also reiterated my belief in that family and good friends are the most important thing in life and to cherish them, even your dear old Nana telling you the same stories over and over again, as she excepts me and my son no matter what and her stories also make Grayson smile.

7) What did your Childs diagnosis change in terms of your dreams for the future?
Honestly a great deal, when your pregnant you dream about the many years ahead, the day they learn to walk and talk, building sandcastles, picnics in the park playing football with daddy.
Then them getting married and grandchildren. All these things maybe possible for Grayson but they may not, it has been hard realizing our life may have Grayson living with us forever but if it is that way there is a reason for it. This may not be the future I had planned but it is a dream one.

8) You run the country and you have the power to change ONE thing what would it be?
Make everybody have to help look after a child with disabilities for a week, I think the outside world has no idea the impact of this on life, good and bad. All they see is the supposed free money we get for no reason, they need to see the hardwork, heartache, fear and then in turn the pure pleasure our children bring and then maybe the world would be a slightly easier place for our babies to live.


9) What organization has delivered excellent service when dealing with any aspect of your Childs disability?

I would have to answer with 2. Firstly our GP, who see's Grayson same day no questions asked, even if I am being neurotic and all he has is a cold he understands my fright and just looks Grayson all over. Secondly our Health Visitors, they saved Grayson's life, literally, they always believed me when I thought something was wrong and fought for us to get answers. They also gave me the most incredible support, which has been invaluable.

10) Have you ever had to fight for something to help your Childs disability?

I am sorry to say I think the fighting never stops, its so hard and I don't think it should be this way, but I shall continue to fight every day as my son is worth it. Our current fight is just trying to find out the date of his surgery in September as its less than a month and we still do not know the date. But I am sure you will all agree, its well worth the anguish.
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE
#2
Posts: 1,853 | Threads: 41
Joined: Oct 2009
Reputation: 13

  • Administrators
amazing hun, i read every spotlight on here and can congratulate you all enough on the fantastic job you (and everyone else) does with their children! grayson sounds like a little star, and deffiantly keep fighting, hes so worth it Smile

xx
#3
Posts: 46 | Threads: 4
Joined: Jul 2010
Reputation: 0

  • VIP
Thanks for sharing your story. Grayson is a lucky little boy to have a mum like you fighting for him.

I think we are all very lucky to have found this wonderful forum.

Louise
Mum to Alexander (6) Friedreich's Ataxia and Hypertrophic Cardimyopathy
#4
Posts: 295 | Threads: 48
Joined: Jun 2010
Reputation: 0

  • VIP
thanks for sharing Smile
#5
Posts: 7,906 | Threads: 3,211
Joined: Oct 2009
Reputation: 11

  • Administrators
4 tips naughty naughty Big Grin
Suppose i will let you off though Smile
A fantastic read and thanks for sharing
Looking for sensory toys at affordable prices then look no further

Sensory toys for children with special needs CLICK HERE


Users browsing this thread: 1 Guest(s)