A mothers voice

My mums contribution to the blog:

Giving481992_10151175798920030_741065946_n birth to a healthy boy, and watching him grow, standing up at the age of six months, starting to walk at the age of ten months, doing puzzles at the age of two, dancing and singing at the age of two and half, does not prepare you for these words: “- your little son has autism, we are really sorry…”.

After my son, Christos, turned two and half years old and still hadn’t spoken any words, we took him to a speech therapist that then referred us for further exams at the general hospital. After all the exams had taken place, we were informed about autism and told that our son was never to be a “normal” child, a “normal” teenager, a “normal” adult. Remove “normal”, replace it with unconventional; what he meant to say was that he would be extraordinary.

It took us a while to realise this. When you hear the word ‘Autism’ the earth crumbles under your feet, you become consumed. First comes the denial, being too hard to admit, then the crying and desperation, and the very common “why us?”. Every parent goes through this, don’t be afraid to admit it, talk about it. It took some time for me to realise that my son has been sent to us by God, he is an angel in our lives who has made us all better human beings and the journey we are on with him, every day, is the most rewarding part of our lives. He has an innocent heart, he amazes us each day with how smart he is and life with him is anything but “normal”; who wants a boring conventional life anyway? We have learned so much from him, he has added such value to our lives, and now I can’t even begin to imagine my life being any different.

Regardless, things haven’t been easy. The hardest part of living with Autism is the start. When we accepted that this was happening whether we wanted it or not we took seminars, followed classes, used the internet for information, exchanged experiences wi906508_1408730306034415_1934515170_oth other parents of autistic children. You are only scared because you don’t understand Autism, we might never understand it completely, but you have to embrace it, educate yourself about every aspect, every therapy, and every study available.

Once you realise that this isn’t about you – it’s not a punishment – it’s about your child, it’s about giving them the best, by being the best, then everything just becomes your everyday life.

Love alone isn’t enough; its’ a combination of love, strength, patience and an unquenchable thirst to learn everything, try everything, do everything for that baby.

We have spent hours driving him back and forth from the age of three to another town so he could have all the available forms of therapy; speech therapy, special education, (ergotherapia) etc. Every day from the age of four I have given Christos private lessons at home, following the instructions of his teachers for about two hours each day. It was such a struggle at first just to persuade him to have a seat for that long and another fight to have him use eye contact and get him interested in listening to what I had to say! Not easy at all! But then, at the age of 8 he began to speak his first words he started with the alphabet, and then he started counting, writing, doing math. It didn’t matter if it was only ‘one, two, three’ and that it wasn’t clear.

Nothing else mattered at that point except for the words ‘one, two, three’.

He was learning fast and we found that communicating through pictures was very useful. I used to take photos of everything and everyone that were part of his everyday life and put it all in a book. He had everything he needed in there and he learned that he could choose what or who he needed, pick it up, show it to me and he would get it. This made our lives so much easier.

SEMC 3MP DSCLearning to communicate was just one of the goals we set to reach. There were so many other parts of our everyday life that needed to be put in order. Things that most families would take for granted; like eating habits, self-care, and behaviour in public places, learning to respect the space of others, waiting for your turn in long queues etc. All of these issues needed special attention, planning and took up a lot of time. When you live with Autism nothing can be left to chance. I remember when he was little and we had to do an activity other than the usual, I had to close my eyes and think ahead of every little detail; where we would go, what we would see or hear which would be out of the ordinary, anything that could upset him, think of his meal times, and be prepared to face any emergency!!! This becomes part of your everyday life; we are prepared for anything at any given time.
Now that Christos is 16, he is able to communicate well with immediate family and school teachers and can express what he wants which makes life much easier for everyone involved; granted that outsiders don’t always have the capacity to understand his speech, but someone is always there to instigate the communication and we are very lucky to be surrounded by people so devoted to his well-being.

He is attending a special needs school in our area and is learning so many new things every day. Schooling hasn’t always been so simple and easy. During the early years of school I used to drive him there and sit around and wait in the car just in case he needed something that his teachers didn’t know how to handle. We know every moan, grunt and cry. It also took me a lot of time and a lot of my patience when we decided to try the oxygen therapy at the hospital for a few months. It was so stressful to figure out how to restrain him in a pressurised oxygen chamber for 70 minutes, making him put on an oxygen mask and breathe through it. But with the right amount of determination he did all 100 therapy lessons which has helped him enormously; his concentration and awareness have improved tremendously through that therapy and I would definitely recommend it to other parents.

Now, Christos follows a programme every day which I make every Sunday for the upcoming week. I make tables with days and times so that he knows exactly what to expect each day. That enables him to be prepared for each day, knowing what will follow and it makes him feel calm and safe. Needless to say, I make some mistakes some times when I am in a hurry and he is quick to correct me immediately! Nothing goes past him; there are no excuses good enough for him. No spelling mistakes are allowed because he can read and write well and most of all, times need to be correct and followed to the minute. Of course, like mentioned in previous posts, there is flexibility in his programme, he is open to changes as long as we discuss it with him, get rid of the incorrect, old programme and print the correct one. You haven’t experienced high-maintenance until you’ve lived with Autism.

Watching him grow, improve and learn so fast has made me so proud. He is such a smart boy. The potential is there, you just need to push a little and have patience. That’s all it takes.

Don’t get me wrong, it’s not easy but it’s not impossible either.

He has grown into a teenager who can enjoy small things; in his own time (also incorporated in the programme) he loves to listen to music, he enjoys watching TV or DVDs, playing on the computer, swimming, going for walks, going to the park, playing on the trampoline, a good plate of freshly made pasta and so much 858634_1403665543207558_1487270437_omore. He has grown into a calm, very cooperative and empathetic boy, a very honest teenager who will not lie or cheat, except for sometimes when he gets cheeky and wants candy or ice cream. He is very clean and likes everything to always be in the right place. That sounds like the perfect teenager to me!

Life is not always what we expect it to be, but when things happen and you might think is the end of the world as you know it, take a seat back, rethink life and you will see that we are strong enough to take whatever is given to us and turn it into something great. My son and my daughter both are my angels, each of them in their own special way and I wouldn’t want it any different.

 

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3 thoughts on “A mothers voice

  1. Pingback: 2014 in review | Just a boy

  2. Really enjoyed reading this honest well written piece,- straight from the heart of a mother whose journey in life took her down a road she never imagined she would be traveling. But if I may say,
    through all. the struggles you seem to have triumphed in your quest You are indeed an incredibly talented family who deserve every good thing life can throw at you.

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