UCAD - About ourselves..

Undiagnosed Children's Awareness Day

I'm going to explain a little more about what life is like having an undiagnosed child....

To outsiders our lives may look fine and dandy on the outside but in reality our lives is totally different than you expect...We are often told that we always have a smile on our faces which is true as that is just the way we are... we try to keep upbeat about life in general...behind close doors life can be hard....having an undiagnosed child means we have no idea what to expect or happen in the future...will he get worse or will he improve? No one knows, no one can give us the answers we seek...We cant have our house all nice with picture frames, ornaments or objects on surfaces as everything has to be kept out of reach from Roo...pictures are hung on the walls..ornaments/objects/vases etc are all hidden away as Roo will destroy them, he doesn't understand right from wrong...Our surfaces on units etc often look very boring but we have gotten used to it now...drawers, cupboards need to be locked or blocked to stop him from getting into them. We have to watch Roo all the time as he has no sense of danger so will think nothing of climbing onto a chair to get to the table and balance precariously on the edge ( which has happened once when I took my eyes off him for a few seconds and I managed to dive and save him before he fell) , he will touch electric sockets, touch hot things, the list is endless... he simply cannot be left...so if I am on my own in the house I have to take him to the toilet with me to ensure his safety unless he is strapped in his buggy, asleep. Our days are filled with entertaining Roo, trying to teach him signs, trying to get him to understand simple things,...everyday we hope that this is the day that something clicks and he starts to understand... there are days when we feel so disheartened and think is there any point in carrying on signing to him but we pick ourselves up and see tomorrow as a new day, a fresh start and do it all over again because we will never give up, never stop hoping....Our nights are broken often with Roo screaming for hours on end, or simply wide awake and unable to sleep....Roo has undergone many tests - blood tests, MRI scans, ultrasound scans, numerous blood tests, urine tests, eeg's and more...there is no sign of them stopping...The hardest thing is having to see him endure them all but we hope that it will all be worth it in the end...Also because he is undiagnosed he doesn't meet the criteria for many things including equipment so we are realising that we have to fundraise for any equipment that we need that would help Roo and us to have an "easier" life....We are scared and terrified as he grows & develops we are faced with new challenges, new situations BUT despite all this we cannot imagine our life without Roo the way he is...He is a wonderful wee boy who is very cheeky, happy , mischievous and always has a smile for us...


I have made a wee video of Roo journey so far in pictures which you can see below....


video


My son is undiagnosed but he is not invisible...please help us by spreading word all about Undiagnosed Children's Day on 13th April...wear pink or blue clothes to show your support on this day, post photos on my fb of yourselves taking part... I will be making sure that myself and family wear something blue or pink on the day...




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