Our Megan

    

Recent pictures taken in 2014 when Megan was 14/15 years old

When I look at our Megan these days most of the time I see a happy, smiley fifteen year old girl content in herself.  She loves to dance, sing and dress up; her favourite song is “Lord of the Dance” amongst others!  She adores being the centre of attention and is very happy to entertain those around her.  She is chatty, funny and very smart!

Megan no longer lives with us.  Her home is now in a residential community and she constantly has two staff with her all day long.  Letting go of Megan was one of the hardest things we had to do. It was with heavy hearts we had to consider a residential setting, yet two years down the line the benefits to her (and us) are so clear. She has a quality of life we never dreamed she would have in those dark days of her being locked in her own world of fear and pain.  We as a family are in a much better place even though at times there is still the sadness that we can’t all be together, knowing she is happy makes it far easier to bear.

Megan was born in 1999; she was our first child and it was a huge shock to learn she had Down’s syndrome within a few minutes of her birth.  To us she was perfect though, just a baby, like a porcelain doll.  It was to be ENT problems that would prove to be a challenge for Megan.  However her hearing problems were not to be her only difficulties.

I first suspected Megan might be on the autistic spectrum when she was quite young probably around 4 years old.  She had great difficulties interacting with other children, often pulling their hair or pinching them.  She also engaged in routines, repetitive play and she struggled with transition; anything out of routine threw her.

Communication was a huge problem compounded by her hearing loss, though she did manage to learn makaton and was able to communicate through signs, gestures and some speech.  Sometimes the only way Megan could  communicate was through her behaviour which was extremely challenging at times.  When she was small it was easier to contain her outbursts or “meltdowns” however the older she got the harder it was to manage.

After many years of asking the experts, Megan was finally diagnosed with having an autism spectrum disorder (ASD) in 2009; she was nearly 9, a couple of years later she was also diagnosed as having ADHD (Attention Deficit Hyperactivity Disorder).

As Megan grew up her aggressive behaviour worsened; most of the time it was directed at myself in the form of hitting, pinching and biting but she was increasingly beginning to injure herself.  This self-injurious behaviour was intense.  She would hit and scratch her face until it was bleeding, she also pulled out her hair in clumps.  In 2008 it became obvious the reason for her severe self-injury was down to ear pain and she needed major surgery on her ears (mastoidectomy) in order to stop the pain. The surgery was successful and stopped this intense period of self-injury. However, Megan would return to using self-injurious behaviour in the coming years.

At around 11 years of age the situation at home drastically deteriorated, severe sensory issues had kicked in and she was unable to wear certain clothing, often ripping her clothes to shreds and stripping nearly constantly which was extremely difficult to cope with. Megan has probably ticked most boxes in terms of challenging behaviour. Although we loved our daughter dearly we knew we could not go on like this. Our other children deserved a normal life too.

Finding Megan a placement was quite a long process, difficult at times but thankfully she got a place in February 2013. The approach at Megan’s residential community is a holistic one; looking at the whole person and piecing the puzzle that is autism, together. I remember somebody years ago describing autism as being in a “constant state of agitation” which was so true for our Megan. Being in the right environment completely suited to her needs has made the world of difference. Although a difficult journey at times Megan’s transformation has been truly remarkable; she is now at peace.