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The Trials and Tribulations of Raising a Special Needs Child!

It has been an interesting half term holiday. On the one hand Muir has achieved so much and I can, and will, recount for you a number of inspiring moments that we have witnessed. On the other hand he has presented us with some challenges - most of them new. I have already reported on my facebook Muir's desire to help with domestic chores.  To be fair, he has always enjoyed helping. 

On this occasion he was helping our nanny, Inga, unpack the food shopping.  He likes to take the shopping out of the shopping bag and present each item for putting away.  Inga was obviously distracted when Muir unpacked two chicken breasts still in the packaging and deposited them in the roasting oven of the Aga, only to be found a few hours later looking rather unrecognisable!  

The following day was equally as inspiring when Muir demonstrated his desire to tidy up (a preoccupation he has inherited from his mother, I think!). Whilst Inga was answering the door he decided to put the half empty red wine bottle back in the wine rack, despite the absence of a cork!  It is difficult to be angry in these circumstances.  You simply have to laugh.

Then there are the more challenging moments. Our role is to care for Muir and we all do that to the best of our abilities.  By "we" I mean myself, Jonny, Connor, Rory and of course, Inga.  Inga is by far the best of all of us in terms of caring for Muir. She has been his carer since he was born. Jonny is second and then the boys.  I am the one that finds caring for Muir the most difficult.  Were it not for Inga I would have more of a conscience but she is absolutely amazing with Muir and he is completely fulfilled in her care.  Thank God for Inga!  The boys and Jonny have their amazing moments with him too. These are not difficult words to write because they are true.  I love Muir and when he is sick it is only me he wants. But I am not a patient person and Muir time is slow time.  I need to go much faster than that and Muir knows it.  Sometimes we are not the best of friends as a consequence.

We had a seizure free half term but strange behaviour.  In the course of caring for Muir we found ourselves periodically trying to do the right thing for him when he really didn't like it. On one occasion he smashed an antique urn in our hallway. On another occasion he threw the remote control for the television, smashing his bedroom window. He flicked my red wine glass off the breakfast bar one evening whilst trying to persuade him that it was bed time.  On another, he simply pushed a beautiful Halloween dish from the table to the floor where it smashed. 

He knows what he is doing.  He is always sheepish afterwards.  At the first opportunity he will confess to either myself or Jonny if we were absent at the time of the incident.  "Muir push Mummy's bowl. Smash."  "Window Muir throw remote. Smash." Of course, the delivery is slow and the words are not clear even to us. He will spend the rest of the evening snuggling up to one or other of us and smothering us in kisses. The punishment we imposed was no Takeshi's Castle, A Japanese version of "It's A Knock Out" on TV. He loves it.  He wasn't happy but I am not sure if it really served as a suitable punishment. How do you punish a special needs child?  Frankly, I simply don't know.

Then there is playtime that gets him up to mischief.  Today we had our drains unblocked.  Muir had a wonderful time flushing everything and anything down the toilet including the facecloths!

The smashed window incident happened whilst Jonny and I were in London at the Hilton in the Community Foundation Ball. This is a charity that supports other children's charities and every year they choose a partner charity to benefit from half of the funds raised at the Hilton in the Community Foundation Ball at the Park Lane Hilton Hotel in London.  It was an honour for MMT to be their chosen charity this year. The Ball was absolutely magical. From the 700 tomato soufflés served to start the evening, to the cast of Mama Mia who arrived at quarter to twelve, straight from their west end show to perform highlights from the musical Mama Mia. The evening raised at least £350,000 and the Hilton team are still counting.  Ninety five people stood on stage to pledge £500 each for an epilepsy alarm in support of our work. It was a humbling moment.

The Ball Chairman is Dame Maureen Thomas, a very special and truly inspirational lady whom I was told has been organising Ball's such as these up and down Park Lane for 25 years.  Simon Sheehan is the Foundations Director, the consummate professional.  Christopher Biggins, who hosted the evening and conducted the auction was quite outstanding. These might well be times of hardship but the good events for worthy causes are still raising money hand over fist.  It is most reassuring and has inspired me to carry on fundraising through events into 2010.

I think that's all for now folks.  I should sign off now. Half term is over.  But before I do a heartfelt thanks to a great lady, Dame Maureen Thomas, from Ann Maxwell. 

With my best wishes,

Ann Maxwell

 

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