“ Dealing with all aspects of everyday living, making adjustments for the family and siblings. „
When my son was around 18 months old I began to have niggling doubts that he wasn't the same as other children, they were little things that at first only I noticed. At toddler groups he would prefer to play with doors, opening and closing them instead of playing with the toys. At story time he wouldn't listen as the other children were. At our weekly music session (which he loved) he was happy to be a 'free spirit' and work to his own agenda. Gradually i noticed that the other children were starting to talk and communicate well. I became aware that I wasn't finding being a mum quite as rewarding as other mums were because I didn't have that same level of interaction with Max. I approched health visitors about his speech but was always told that 'boys are always slower' and to wait until he was 2.
We moved into another town just after his second birthday and on my first meeting with the new health visitor I expressed my concerns. luckily she was very supportive and had already noticed that Max didn't hold eye contact and whilst we chatted he was content to play with a kitchen cupboard door. She did a series of little tests on Max, things like asking him to kick a ball, stack some bricks or turn a page on a book. I watched on with my heart silently breaking as I studied Max's face for any hint of recognition of what she was asking him but to no avail. By the time I had completed the check list of possible signs of autsim, I was struggling to hold back tears, the list could have been a description of my lovely Max.
Autsim had been at the back of my mind but i had kept telling myself that Max wasn't in a 'world of his own' he was very happy, extremely content and showed us love - none of the things I would have expected from an autistic child but on the other hand everything rang true and although it was to be 8 weeks before we got an official diagnosis, in my heart of hearts I knew. I tried to carry on the rest of the day as normal, I had a 7 week baby as well so I strapped them both into the car and drove off to do the weekly shop - but it wasn't a normal day, nothing would ever be the same again and as I parked in the Tesco car park I broke down and sobbed my eyes out, so many emotions, fear, guilt, sadness, worry. My husband tried to calm me down over the phone and said 'Max is Max, I wouldn't have him any other way' I kept quiet but wanted to shout 'I would, I would have my son without autsim!'
Dark days and weeks followed and luckily we were given lots of support from family, friends, our health visitor and our local special needs nursery where Max had been given a place. I had to grieve for the son I thought I had, I shed many tears over the thought of not experiencing all the normal things I was hoping to share with my son (some of them unessecarily!)
So what is life like now, 3 years on? The only word I can use is EXTRAordinary! With the help of many people, Max learnt to talk at around 3 and now we can't shut him up. He has made remarkable progress but it has been hard work. Max is very routine orientated, gets very distressed at change and has many obsessions which we have to show lots of patience with. He struggles with social interaction and while loves other children and adults he doesn't always know how to interact with them.He is extremely impulsive and has no sense of danger so you always have to be aware of where he is and what he is doing, he will routinely tip glasses or cups or squirt shampoo etc. He thinks literally and had us in stitches a few weeks ago after asking a question about dreams when he woke up, assuming he had had a bad dream we spent at least 10 minutes trying to explain to him that dreams were in your head, just pretend, not real only for Max to reply 'but dreams is a bed shop' We have all had to adapt and have all become experts on Max's 'brand' of autism. We have our own tactics for dealing with melt downs and periods of anxiety. Myself and my husband have often fallen into bed exhausted just from getting through an average day with an autistic child. Max is at school now and has some remarkable talents, he has a reading level of a child way beyond his years and seems to have taught himself to read before he started school. He loves facts and will study books about the human body or electricity for hours on end. There are still many challenges ahead but the most important thing is that now I have accepted and agree that I wouldn't have my Max any other way.
Before I start, I just want to state that this piece of writing I am going to share was not written by myself. I am teacher in a Special Needs School in North London and this is something I came across one day and have often looked at when things are tough. It helps remind me about the wonder and amazement of the children I teach. I don't know where it came from but I'm glad I found it. Some people may say I've misplaced this opinion and some may say it's not an opinion at all but I've put it here, in this category, as it may be of help to parents and carers and anyone who works with people with special needs when times are difficult.
*Welcome to Holland
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David, the Gondola's in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".
"Holland?" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy".
But there has been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will always say, "Yes, that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
**Well, that's all. I hope you enjoyed it and I hope that it gives people the strength it was supposed to. If anyone recognises it and knows where it came from, please let me know because I would love to read more.
One of the main challenges of having an autistic child is that of introducing structure to daily family life. Without some simple form of structure that he or she is able to understand, an autistic child is adrift in a bewildering world where the clock and the calendar rule. Our daughter, Joy, was like most autistic children in having virtually no understanding of the concepts of time or days of the week. Events took her by surprise because we had no means of warning her that something different was going to happen. She was often frightened and frustrated by things that were unexpected. On several panic-stricken occasions we nearly missed important holiday flights because she was so upset. The clock was her enemy, governing (apparently at random) both what we did and when we did it. "Hurry up" and "Be quick" were phrases that would send Joy into stubborn angry moods that were more counter-productive than helpful. She just did not understand how this circle with two moving sticks was able to rule both her life and ours in such a dictatorial fashion. Faced with such an impasse, parents of autistic children soon learn to draw on their resources and become remarkably adept at devising ways to overcome such difficulties. Telling the time using a clock proved a tricky challenge, as yet to be fully overcome, but our solution for helping Joy understand the calendar focuses on one object - a simple printed sheet, designed with a desktop publishing program, that I run off on the computer each week. It shows the seven named days in separate empty sections with large colour-coded words and borders. The chart is prepared on a Sunday evening when I write the word SCHOOL in each of the Monday to Friday sections and HOME in the Saturday and Sunday sections. GUIDES goes into Wednesday under SCHOOL and CHURCH goes into Sunday under HOME. Joy pins the chart up on the wall next to her bed. At the end of each day, she is all
owed to cross out/colour in the section corresponding to the day that has just finished. Sometimes she draws pictures to show her own interpretation of something that happened on that day. Sometimes we draw pictures to illustrate something different like a stick person asleep in bed under a roof to indicate that Joy will be spending the night at her respite carer's house. We can also add other pictures/words to forewarn her about visits to the dentist, holidays, parties etc. In this simple, graphic way, we can help Joy be more aware of our alien concept of WEEK and allow her to reach some understanding its structure. Inevitably, of course, things will occasionally go wrong and she will get ahead of herself without us noticing. We can assure you that trying to get a teenager out of bed on a Friday morning for school, when she is stubbornly convinced that it is Saturday and she doesn't have to go to school because she crossed out Friday before bedtime last night, is NOT an easy task! So, without the chart to "map out" her week, there is no doubt that Joy would still be adrift in the bewildering world of clock and the calendar. Yet the rest of us take for granted these everyday mechanisms for structuring time. So just take a moment and put yourself in the place of an autistic child - use your imagination to envisage a world where you have no concept of time ...... a disturbing vision, isn't it?