Archive for April, 2010

For the Love of Mia

Friday, April 16th, 2010

When your child can not or has trouble letting you know what he or she wants or is feeling, what do you do? For Mia’s daddy the answer came to him one night in a hotel room…

At 2.24am on Christmas eve 2004 my life changed forever when my gorgeous daughter Mia was born. But not in the way I had planned. Deprived of oxygen at birth, her first few hours of life were very hectic as doctors and nurses fought to save her life. My wife had to have an emergency episiotomy and Mia was blue when born and whisked away amongst alarms, frantic doctors and a huge number of people that came out of nowhere. My wife’s bleeding was so bad, she spent her Christmas day receiving three blood transfusions and I needed to stay with her. It was to be four long hours before she and Mia had stabilized and I was allowed to up to the special care unit to see Mia.

I have always had a thick skin and an ability to cope with difficult situations by detaching from them, but when I saw my beautiful daughter wired up to countless machines with tubes and wires everywhere I felt pain like I have never felt before and promptly collapsed. My legs just lost their strength and I wept uncontrollably. How could I go back to my wife and tell her what I had seen, I thought? It was immediately clear that Mia’s brain had been irreparably damaged and her eventual diagnosis was of cerebral palsy or CP. Mia was to be completely physically disabled for life.

As each child with cp is different, we could only get broad advice from health professionals as to what to expect. As time wore on it became clear that the NHS wasn’t going to be able to dedicate the resources Mia needed. In the first year just keeping her alive was a struggle as she had major trouble with coordinating breathing, swallowing and eating. Her eating problems were so severe she was surgically fitted with a tube direct to her tummy for fluids to go straight in, bypassing her mouth as her oral coordination was so badly damaged. Her inability to accurately control her mouth and swallow reflexes also severely impacted her communication, which meant speech was going to be almost impossible we were told. We were devastated. None of the imaginings we had for our first child involved the level of illness she had, the trips to the hospitals, the operations and the sheer grief of it all. For Mia’s sake though we soldiered on, still determined to do our best for her.

The alternative communication solutions we were offered were impersonal, bulky and expensive. I thought there had to be a better way of helping Mia communicate with us. As she grew it seemed that although physically disabled, she was cognitively alert and aware. I worried that without a workable system of communication she could access easily, her ability to learn at a crucial age would be compromised.

Around the same time I got an iphone for work so I could pick e mails up when I was traveling. One night in a hotel with some time on my hands, I started looking at the Apple’s app store with the Apple slogan “apps for everything” ringing in my ears. But where was the app for Mia I thought? I couldn’t find one, but was sure I could design one that would allow Mia to communicate more with us.

Not being the most technically gifted person, I engaged a software company to build a communications app that was fully formed in my head and dealt with the communication issues I had faced. I wanted a system I could add photographs of people and objects Mia would recognize, rather than the obscure artwork other systems offered. I wanted to be able to add my voice to the app rather than some frightening mechanical voice and I wanted to have flexibility to change and edit content easily.

The result is the iComm, the app I have now launched for the iphone and new ipad. Feedback from parents with disabled children has been fantastic as they, like me, were completely frustrated with finding ways of helping their children communicate.

Then came another realization. In creating an app for my disabled child, I realized I had also created a communication device for another audience, able bodied toddlers who have not yet developed speech but have a burning desire and need to communicate. All parents of toddlers have played the guessing game when their child is expressing its frustration at being unable to communicate accurately what it wants, whilst using the one communication tool it has got, crying – loudly! Parents with able bodied children have been equally impressed with the iComm.

Doing something productive has helped immensely with the grief and pain of Mia’s diagnosis. However despite all she has been through, she is a very happy child whose laugh is infectious and inspires me to move on – whatever pain I feel around her condition. If she can be so happy at times, I feel I have a duty to deal with my own grief better. Doing something positive that other disabled children can benefit from also, has played its part in my lifelong goal of living life positively again.

The iComm is available for download from Apples app store for use on the iphone and new ipad. There is a free version and to get the full version you can pay an upgrade fee of £15.99 to get access to all twenty categories. This also gives the ability to record your own voice files to go along with your own pictures, to help a child without speech communicate.

Mia

Go to www.miasapps.com to find out more and see a video demonstration of the app or download it today from the app store on your iPhone.