Martin was born on a cold day in late autumn, following a happy and healthy pregnancy and fairly straightforward caesarean section. My doctor had advised a "section", due to "pelvic disproportion", being that I was classified medically as an " elderly dwarf primagravida" i.e. a 35 year old first time mother with the grand height of 4 feet 10 inches!
Having gone into the maternity unit on the day before the caesarean to prepare for the birth, there was a great sense of anticipation mingled with some trepidation, as the doctors and nurses explained the procedure. The day dawned and Tony was able, (after some discussion with Sister on his ability not to faint!) , to come into the operating theatre to be present at the birth, he appeared at my side, smiling at me from behind his blue mask and hat(essential hospital gear), and clasped my hand tightly.
Although many people may believe that a caesarean may be an "easy option", it is not at all, it can carry risks just as much as a natural birth, and so we were still quite daunted. After a great deal of tugging (I had been given an epidural),Martin made his entrance into the world and this image, as is probably with most mothers, is still clear in my mind today, as vivid as any photograph could be. He was given to me to hold straight away and this was such a precious moment, as was the moment when Tony stood holding Martin and looked down at him with so much love in his eyes.
So Martin came into our lives, with his large round blue eyes and "little worried frown", which Tony remarked upon, saying it was just like mine. Our lives had changed enormously, but at this stage, we rejoiced in it and loved the little fellow as if our hearts would burst.
All of the usual checks were made and it was declared that we had a fine healthy 7lb 12oz baby boy. But there was a problem, apparently…Martin had talipes of his right foot, "club foot", to put it plainly. The paediatrician came to see us just after we had returned to the post natal ward.
Obviously this was very upsetting to us to discover that our new baby had a disfigurement , as it would be to any new parent. However, once we had been able to discuss the problem with the orthopaedic surgeon (who was also quickly on the scene), we were a little happier and still were able to enjoy the first special hours of Martin’s life.
Within a few hours we had been given a tiny surgical boot for Martin to wear and were given instructions on how to fit it on - as well as being shown how to massage his foot. This was all to help to straighten the foot and leg, although it was to need an operation to correct the problem or, we were told, he would not be able to walk properly, - if at all.
So there we were, believing that we had been given more than enough to cope with, and having begun to adjust to the situation, counted ourselves as lucky that things were not any worse…..
I duly got on with the business of learning feeding and nappy changing and eventually became fairly dextrous at dealing with his little boot. Tony took lots of photos of Martin to show his colleagues at work - and come Christmas time, only 5 weeks later, we were sending pictures and letters to every friend and acquaintance we could think of! We must have been "baby-bores" in a big way at this time. Not an uncommon condition in new parents, really quite understandable, it’s nature’s way of making sure that we are kept motivated in our job of caring for a new life.
Martin grew into a happy, chubby six month old. I religiously took him to the clinic every week where his weight, height and general development were plotted on a graph and at 5 months or so, when he resembled a miniature "Bhudda", it was declared that his weight was "just right"! I was congratulated for coping well and reminded that I didn’t have to be a "perfect" mother, that a "good enough" mother would do fine. I walked home along the lanes to our cottage, feeling that I was the happiest woman alive, pushing Martin along in his buggy, looking forward to Tony coming home from work. Life was pretty good.
During the month of May, when Martin was 6 months old, he had the operation on his right foot, to straighten it. He seemed to take it all in his stride, but it was a poignant sight, seeing him being wheeled off to the operating theatre on a hospital trolley. I stayed in hospital with him with a z bed alongside his hospital cot, so as to be on hand to comfort him and give him his feeds.
Tony came to meet me at the hospital when Martin was due out of theatre and we waited for what seemed an age for him to come back from the recovery room until at last, there he was, being wheeled back to us, only this time with a plaster on his right leg. He came round slowly and was glad of a cuddle.
We went back home, due to return to the hospital in 6 weeks to have the plaster removed. Martin was not noticeably upset by all of this upheaval, in fact, when I was holding him on my lap, giving him a bottle of milk, he would lift his right( plastered) leg up high and bring it down heavily onto my leg! Needless to say, the doctors were amazed when they removed the plaster to find a strong healthy leg beneath it and not a thin wasted one, as they were expecting.
On the whole, Martin was a calm and placid baby. Looking back on those days, we wonder if perhaps he was "too placid" and that perhaps the beginnings of autism may have been there, it’s impossible to know for sure. Autism is a very insidious condition and can "creep up" on a child over a period of time until suddenly it is there in it’s full state.
With other handicaps, such as Downs’ Syndrome, one can see the problem straight away and there is absolutely no denying that this must be completely devastating and distressing - but with autism, one starts out believing that one has a "normal" child only to gradually discover that there is a problem. This is one of the things which make it such a cruel disability.
So autism is a very complex condition, there is a genetic factor, but there are also several things that can possibly "trigger" it, but we cannot really go into these at this time. However there is a great deal of research being done to discover the causes, so maybe one day there will be an answer to hundreds of parents’ anguished questions.
A month after his operation, Martin was christened , this was, naturally, a very happy occasion which was well attended by our families and friends. He was christened at the church of "St Aubin -on-the-Hill".
Our first sign of concern about Martin was his late walking. He walked at about 19 months, long after his peers, but we assumed that this was because he had his leg in plaster at the age of 5 months, which slowed down his crawling.
His 12 month check at the Health Clinic did not reveal any developmental problems at all. However, by his 2 year check it was clear that something was amiss. People were saying that " Martin is slow and not mixing enough with other children". In fact, I was taking him to "Mother and Toddler" groups on a regular basis. Martin showed no inclination to play or mix with the other children and would walk around the room trailing his fingers horizontally along the wall.
At 2 ½ , I took Martin and John to a child’s 3rd birthday party. All the other children were enjoying playing the usual games and having fun with toys. Martin was crouched down in one place, twiddling his fingers in an odd fashion in front of his eyes, then twirling a Smartie packet between his fingers in a repetitive way. This stands out in our minds as an incident which crystallised our fears about his development.
Earlier, at his 2 year check, I asked, perhaps being prompted by some instinct, "Do you think that he is autistic?", ( this hadn’t previously crossed her mind ), and the Health Visitor replied, in her strong Geordie accent " No way is he autistic!" To be fair about this, in spite of his lack of speech, Martin showed no strong indications of autistic behaviour at the assessment.
Martin’s lack of speech caused sufficient concern for the health visitor to refer him to the hearing specialist. After several sessions at the hearing test centre, the hearing specialists determined that Martin was alert to a variety of different noises and that there was no real problem with his hearing. They also observed his behaviour when presented with a toy cup and saucer, etc. They noticed a lack of appropriate imaginary play. Tony remembers I coming out to the car with Martin at the end of the last session, and saying, " The good news is that his hearing is okay". We both suspected what the bad news would be. Martin clearly had some developmental problem. The question in both our minds was "What?".
At around the same time, I had decided to take Martin to our doctor because Martin had been banging his head repetitively on any hard surface he could find, saying " Toothy-pegs hurt!". At this time neither Martin or John were yet walking so having climbed up a flight of stairs to the doctor’s surgery with one crying and struggling child under each arm, she arrived inside looking rather dishevelled with her headband down around her neck . The doctor took one look and said " You need help!"
Help was certainly what we both needed, feeling sad, confused and isolated, we hardly dared admit, even to one another, in those early days, quite what our deepest fears were. It was when we watched the film "Rainman" together that the tears came and then at least we were together in our grief. We say "grief", because that it what it was, the loss of our son, the loss of our hopes for his future. It was a bleak time.
In spite of our sadness, Martin still brought moments of humour and joy into our lives, the expression, "One day, we’ll laugh about this!" was a well used one. Being a parent of a child with autism, a sense of humour must be high on the list of qualifications, except that you don’t apply for the job, it is thrust upon you.
However, these were the early days and the next step was a visit to the paediatrician . For the first visit, I went on my own and saw a registrar who observed Martin, asked general questions about his behaviour and asked me to undress Martin ; clearly this was to check for any signs of child abuse as Martin’s forehead was bruised due to his constant head-banging. While nothing was ever said explicitly, the implication that we had abused Martin in some way, was very distressing to us, especially as we had come looking for help and support rather than suspicion.
One day, not long after this, Martin was in his bedroom and began a particularly severe bout of head-banging. Immediately afterwards he picked up one of his alphabet blocks which he had previously appeared to ignore and named the object illustrating that letter, (e.g. A for Ant ). He systematically proceeded to pick up every block and name the objects accurately. Some of these objects or animals were quite unusual, not something he would have come across elsewhere. Before this, he had shown no desire to name any objects of any sort, and we found this sudden recall quite amazing.
Martin was to amaze us in this way time and time again, often when we were at a low ebb and felt it particularly difficult to cope with his behaviour. It was almost as if he was desperately trying to reach out to us and say, " I’m here, I need your help, please don’t give up on me !" and so we were given the hope and strength to carry on. For all his problems he had a very affectionate nature and with his blond hair and big blue eyes he could tug at our heartstrings. On one occasion , when I was tucking him up in bed for the night, talking quietly to him, saying that I understood how difficult it must be for him, not being able to communicate easily with us. Martin took hold of my hand and squeezed it hard, as if to say "I understand.".
Many times, too, during these early years, I felt very inadequate as a mother, especially when seeing other mothers managing their young children with apparent ease. Even though professionals re-assured her, there was always a niggling doubt that perhaps she could have done things differently and Martin might have been more able. However, as time went on this feeling lessened slightly, although with every situation we still have to weigh up the best way of dealing with it, and sometimes we can still get it wrong. We are all only human, after all, and trying to do the best we can.
So Tony ploughed on with work and I did so at home, taking Martin out to the park, to friends, to "Mother and Toddler" group, it was almost frenetic, in the hope that if he was to do all of these things, somehow everything would come right…. We gave him a party at home for his 3rd birthday, lots of children came. All of the children played and enjoyed themselves, Martin was distanced from it all and by the end of the afternoon it was very clear that he was very stressed by the general noise and excitement, he curled himself up in a corner, his hands twitching desperately in front of his face. He was given presents and did not know how to open them, he looked at the parcels and put them on one side.
Two months later he was seen by a Health Visitor who was very kind and it was a relief to talk to her and express all of the mounting concerns and by the beginning of March, Martin had started at Mont-a-l’Abbe school nursery. By this time the words " Autistic tendencies" had been used and it was something of a relief, albeit a small one, to have some idea of what we were up against, although with hindsight we didn’t fully understand the profound effect his autism was to have on his life and the lives of us all, his family.
Our family was made up of four of us, Tony, myself, Martin and John, (Roy was not born until 1995). John was born 16 months after Martin, so they were babies / toddlers at the same time. John had a different temperament to Martin and loved going to parties etc., although he did have a speech delay. Initially, this was put down to the fact that he had Martin as a role model and also that I did not spend enough time on him, being so preoccupied with Martin’s problems. This may have been partly true but both myself and Tony spent time playing with and reading to the children.. Of course, there was no doubt that John, at the age of 6 months or so, began to be rather confused by his big brother’s strange behaviour and would often copy him. However, as John grew older, it was apparent that he did have his own difficulties with language and comprehension, although they were exceedingly milder than Martin’s severe autism.. There were some very poignant moments when John would try to play with Martin, only to be ignored, - this made it a very hard time for John too.
So Martin had started to attend the nursery at Mont-a-l’Abbe Special Needs school for 2 mornings per week which gradually increased until he was full-time at the age of four. At last we felt that he was somewhere that would be right for him and accept him, whilst at the same time help him to learn. It was to be a long battle, the road to learning. Meanwhile, I had some time to spend alone with John and to take him out or just rest at home with him and that was something valuable, too.
Mont-a-l’abbe was, (and still is) a lovely school with a happy and caring atmosphere. Although Martin used to cry when I first left him there, he soon adapted and began to enjoy being there. Meanwhile we still carried on teaching what we could at home, although it was not easy. Toilet training him took until he was 6 years old, and for a while it seemed as if he never would be. I would spend hours on the landing, while Martin sat on the toilet, trying to "go", but once he got into the routine of going to the toilet at certain times, he was brilliant. His last Health visitor gave some valuable advice, which was: "Don’t compare Martin with other children, compare him with himself". This advice still holds true to the present day - we were at a friend’s barbecue last summer and got talking to a young lad there, as we continued the conversation, I realised that she had been in the maternity unit at the same time as this boy’s mother and in fact, the two boys had been born within a couple of days of one another….Needless to say, this hit hard for a few minutes as the contrast between the two children was so marked, (Martin had come to the barbecue with us).
It is on such occasions that your child’s "ghost", (as it has been described by other parents), comes to haunt you and if not careful this is when one can drown oneself in a sea of self-pity and what might-have-been and "if only". A terrible thing to say, perhaps, but it is almost as if your child has died but your mourning for them is never over.
So the advice we were given to "compare him with himself" was very important, and we rejoiced in each new thing that Martin learned to do, however small, because to us it was a small miracle. On occasions, we could see him trying so hard to do something, his will was so strong, he clearly didn’t want to give up trying and as weary as we sometimes were, the very least we could do was to keep trying with him.
We also noticed that Martin would watch John quite closely at times and then become very angry and frustrated when John was doing something which Martin himself was unable to do. This anger would sometimes cause him to "lash out" at John, who obviously became very upset by this, not knowing why his brother seemed to hate him when he had not provoked him in any way. John would then cry and Martin would become even more agitated by the noise of his crying, which he found very hard to cope with. This situation was very far removed from my early hopes of Martin and John being good playmates for one another, instead I became a "buffer", warding off Martin’s attacks on John and frequently being bitten and punched instead. Looking back, it is hard to believe that we got through these very difficult times, but as most people do in a crisis, we "got on with it".
We did receive lots of good and helpful advice from a lot of people, we also had our share of criticism (which wasn’t quite so helpful.) Some folk took the attitude that if they had the boys they would make a better job of it and on a bad day one could have been tempted to let them try! At the end of the day, we were doing our best, even if it wasn’t everybody’s best!