Antoinette Bruce-Alexander (Mother of Daniel and Kayleigh

My second child, Daniel, was born on the 17^th May 1999 by caesarean section. He was a healthy, normal boy with big ‘wise, old man’ eyes. He was responsive, awake, alert and gorgeous! He weighed 3.00 kg exactly and he had an APGAR score of 9/10. He was breast-fed for 3 months continuously and for a further 3 months with a bottle with expressed milk and gradually changed over to milk formula. He gave us no unexpected ‘baby-trouble’. He went to a day-care mother for the first two years of his life and there she had a policy of all the babies being treated equally, fed the same food and played with each other and the same toys. He was loved very much by his ‘Auntie Rita’ and her whole family. He learned colours, shapes, counting to 20 or more and he started constructing sentences, but he was not progressing at the same speed as the other two year old children. It did not concern us at that stage at all. We did not want to compare him with any of the children of two years old that we knew. We have been told not to compare our children, so we tried not to do it, but……….. He knew fruit names, vegetable names, all the children’s names at the day-care centre and more! He had no trouble interacting with the other babies – as much as babies of 3 months to two years interact with each other. There was a lot of play next to each other and not with each other.

Daniel was a baby who got sick easily. I spent a lot of time and money in doctors’ offices and pharmacies. He had a lot of ear infections, upper respiratory tract infections and tonsillitis. He always ended up at the doctors office and getting antibiotics at the pharmacy. We cannot say for sure, but we believe it compromised his stomach lining and had a lot to do with the onset of the severe symptoms of Autism.

The day-care mother only took care of babies up to the age of two years and then we had to move Daniel to the same Pre-school that his sister attended. There we noticed a remarkable difference between his development and the other babies of his age. He seemed to quickly lose most of the words he had learned while with the day-care mother. He refused to communicate with anybody other than his sister and she became his official ‘spokesperson’. He only had to make a sound and his sister knew exactly what he wanted, needed or disliked. His speech became nearly non-existent. He lost the little sentence construction abilities that he had. Things got a lot worse when the time came for his sister to go to ‘Big School’ and leave him at the Pre-school by himself. The owner of the Pre-school, his teacher and the staff did not know what to do with him or how to communicate with him at all. His end of year reports always said the same thing: Daniel cannot be tested because he refuses to communicate or co-operate with instructions. He does not take part in any activities or physical exercise with the other children. (We were told later by the Pre-school owner that he would snatch a toy – sometimes away from a child playing with the toy - and scuttle in under a table to play with it alone and would physically fight with any child who wanted to take the toy back or away from him. But this was never reported on formally on his end of year reports.)

We noticed a remarked delay in his speech just after he started at the Pre-school and thought about what we should do about it. We decided to take him to a Paediatrician to request that Daniel be referred to a Speech Therapist because of his speech delay. The Paediatrician listened to me and sent us home with the instructions to come back in six months if we were still concerned, but to remember that boys develop later than girls and that we have nothing to worry about. We went home and battled on for another six months.

We noticed other things about Daniel that worried us. He never seemed to want to sleep. He never got tired!! He was extremely stubborn. He always wanted to do things his way or no way. He wanted to be picked up and immediately change his mind and wanted to be put down again. He jumped all over the furniture at home and although we tried to discipline him, nothing we did could discourage him. We tried smacking, shouting, talking nicely, ignoring him, etc. but nothing at all helped. He had a very limited amount of food that he wanted to eat. He lived off Vienna sausages, yogurt, cheese, bread with peanut butter and Bovril and Coca-Cola. No fruit, no vegetables and nothing new! Plus other things that we did not even at that time recognise as a problem.

After the six months were up, we made another appointment with the Paediatrician and took Daniel again. We were told the same thing, Daniel is a boy, the Paediatrician’s own son only talked at four years of age, we must not forget that boys develop slower than girls, etc, etc. I must not be a neurotic mother!! He cannot give me something to make Daniel sleep because children will sleep when they are tired, we must try to keep his sleep times the same. Stick to a fixed routine. Take his baby bottle away at night. All the things that we took as good advice, but nothing that worked! If we were still concerned in another six months from now, please make another appointment. But stop being a neurotic mother that looks for something wrong with my child!

I was horrified, felt chastised and went home with Daniel feeling very low and angry at not being believed or listened to.

We now battled with Daniel daily. His sister was traumatised with all the screaming and shouting. WE hardly slept as a family and Daniel got worse. He could very easily tune out of his environment and behave as if he did not even hear us or notice that we were with him. He could however hear very well when his favourite TV programme or Video was playing. He could even sing in a very clear voice and pitch with any song that he fancied at the moment. His behaviour got worse and we did not know how to react around him without it turning into a war. He screamed at changes, he screamed at people saying hello to him, he screeched when he had to go into shops or shopping centres. His behaviour got worse at Pre-school. There was no change to his limited diet and he refused to even try anything new. Most of the time we knew what he wanted, but he would have new and completely unexpected ‘must haves’ that could not be pre-empted. We did notice that he could be very attached to certain objects or me.

We only got a few hours of sleep a night. Daniel would only fall asleep over my shoulder while I walked up and down the passage with him. I could not put him down when he finally fell asleep in his own bed, he would know immediately and wake up again. Some nights, I slept sitting in the lounge with Daniel still draped over my shoulder. Or I would put him on my stomach while lying in my bed on my back and try to get a few hours of sleep. As a family, we were utterly EXHAUSTED!

WE waited for eight months after our last visit to the Paediatrician, partly because I was afraid that the Paediatrician would just tell me that I am neurotic again, and made another appointment. This time Daniel and I went through the whole process of asking for the referral to the Speech Therapist. This time the Paediatrician asked me more questions, or was more willing to listen to everything about Daniel that did not seem ‘normal’ to us. I told him about Daniel’s lack of sleep, his poor speech, his ‘tuning out’, his tantrums and screaming for everything and his ‘difficult’ behaviour at home and at school. To name just a few, because, we did not know that what we saw as Daniel’s personality ‘difficulties’ were somehow signs or symptoms of something much bigger.

The Paediatrician made out referral letters to two people, one was to a Speech Therapist and the other was to a Clinical Psychologist. I took Daniel and the letters home and phoned both people to set up appointments. Later that same afternoon, I had a call on my home phone to say that my husband and I must please come and see the Paediatrician urgently at his office. We were a bit surprised, but we made the trip to his office to see him. He was very apologetic and told us that he discussed Daniel’s case with the partners at the practice. They all agree that Daniel’s behaviour, speech delay and all the other issues indicate that he has a condition called Autism and that he thinks that Daniel’s case is quite severe. He could not give us any clear description or what we were supposed to do now. He suggested that we take Daniel to the Speech Therapist and the Clinical Psychologist for a proper assessment and to also take him to an Audiologist to check his ears. Thereafter we would go to the Red Cross Hospital in Cape Town for a final diagnoses.

My husband and I went home a little dazed and shocked. The Paediatrician gave us a little booklet, the only one he had, and told us to read it and look for phone numbers inside to get more information about Autism. He also asked us what we did for a living and told us to think about relocating to Cape Town, Johannesburg or Durban to get the services we need for Daniel.

The first appointment was with the Audiologist, it was a disaster! She gave Daniel some brightly coloured interlocking building blocks. “To keep him quiet,” she said! He sat on my lap throughout the whole test, sticking the blocks down my shirt and digging them out again. He did not mind the earphones at all, he seem to not even notice them at all. He was very busy with the blocks. She managed to check the inside of his ears and said that she could not find anything irregular. Test result: Inconclusive.

Next appointment was with the Speech Therapist. She was a treasure! We learned more from her about Autism than from any booklet, phone call, etc. She took Daniel and did the diagnostic test with him and he co-operated very well. She was kind and gentle with him. But she did not rely on him and his responses only, she asked us a load of questions, we had to fill in one of the many long drawn-out forms that formed the basis of every assessment from then on. In subsequent therapy sessions with her and Daniel, we learned so much. We attended every lesson / session with Daniel and we came home and applied all the information from the therapy session at home. We were surprised that he allowed the ‘homework’ and co-operated so well. Her report was very comprehensive and confirmed the diagnoses made by the Paediatrician as Autism.

The last appointment was with a Clinical Psychologist. This lady was also very kind and gentle with Daniel. We had to answer the questions, fill in forms and go through two hours of assessments again. She did the Griffiths test with Daniel and reported which areas were delayed and which areas were at the correct age or above age / ability. She also confirmed the Paediatrician’s original assessment of Autism.

The Paediatrician made an appointment for us to go to the Developmental Clinic at the Red Cross Hospital in Cape Town in October 2003. He explained to us that he has had very little to do with diagnosing children with Autism and he would feel better to have a final diagnoses from the Specialist Paediatrician at the Red Cross Hospital’s Developmental Clinic.

We went to the hospital at 8:00am in the morning on a Tuesday. Daniel was restless the entire morning. He did not want to be in another Doctors office! I must say, we all felt the same. We were all hungry and irritable. We sat in the waiting room and waited, and waited, and waited!!! We were eventually shown into the Specialist Paediatrician at 14:00pm. (Six hours later) This assessment was also two hours long and Daniel did not want to co-operate at first. He hid behind me and my chair for half the appointment. He only came out when she brought out a few ‘form-boards’ with shapes. He then performed all the tasks that she gave him and with all the tasks / tests, she would point out to us all the typical Autistic behaviour that she observed. Some of the behaviours that she pointed out to us, we did not even know had anything to do with Autism. We only assumed that they were part of Daniel and his personality. (Behaviour like: walking on his toes, smelling everything before he puts it in his mouth, lining up toys or objects, etc.)

We received a positive report from the Specialist Paediatrician at the Red Cross Hospital. She confirmed that Daniel had Pervasive Developmental Disorder – Not Otherwise Specified. PDD-NOS. She thought that Daniel was on the Lower Functioning Autism Spectrum, but with a good prognosis for the future if we continue with the therapy he received and ‘homework’ that we do at home with him. Further advice that she gave us was to enrol Daniel into a small, specialised Pre-school for children with Autism or a centre that will cater for his special needs with speech delay. We went home feeling a bit more positive about the future.

(I stopped working fulltime when Daniel was formally diagnosed to spend more time with him at home. I was also available to drive him around to all his therapy sessions and do all the ‘homework’ with him.)

When we got back to East London a few things happened almost at the same time.

We found a very special lady who runs a Pre-School for deaf children. She assessed Daniel and he was immediately accepted at the Carel du Toit Centre for deaf children. This centre concentrates on teaching partially hearing and profoundly deaf children to speak. The centre was a small, quiet place with a small number of children, two teachers and an assistant. Daniel was very happy there from the very beginning. He loved the new environment and quickly started co-operating with the routine of the Centre. His vocabulary increased dramatically. His social skills improved with facilitation where needed to help him understand normal play activities and he took part in almost all the activities of the Centre. (At the next year’s follow-up assessment at the Red Cross Hospital, the Specialist Paediatrician was amazed at the progress Daniel made in just one year. She upgraded his diagnoses to PDD-NOS leaning toward the Higher Functioning Autism Spectrum.) He did not like the end-of-year concerts. He refused to take part in them. He could be heard singing all the songs to himself, but would not join the other kids when they were performing on the ‘stage’. He did not like the puppet brought in by the lady who came and gave music therapy / sessions at the Centre. (Kindermusik) He screamed and refused to even go into the same classroom as the lady and her puppet when the puppet came out of the box. He got piles of homework that came home every day in a file. We sat every night with him and his file and worked through the work. Some nights he did not want to work and we did our best to do the work with him without upsetting him too much. But we made sure that he always did what he was expected to do even if we had a bit of a meltdown in the middle. I will always be grateful to the Carl du Toit Centre for the two and a half years that Daniel spent with them. They were the first of many angels that came into our and Daniel’s lives. WE received parent guidance from the staff at Carl du Toit Centre. They taught us to teach Daniel at home. They showed us how to work with him to get the best results and we still use all the techniques they taught us and follow the advice they gave us. We could not have asked for a better Early Intervention for Daniel than what he received at the Carl du Toit Centre. I can write a book about the good work of the Carl du Toit Centre and the ladies who work their magic there.

The second good thing that happened to us (and Daniel) was the good advice we were given by one of our angels. We contacted a lady in Cape Town about Autism in general and to find out what advice she had to give us in the management of Daniel and his Autism. She gave us a lot of good, practical advice. I spent hours with this lady on the phone picking her brain. She told us to try putting Daniel on the Autism specific Diet. Gluten-free, casein-free, sugar-free and preservative free. We were supposed to take away all the stuff he was eating and putting him on a baseline diet of rice, meat and water. (Maybe we were chicken, but it sounded a little harsh to us.) We were advised to give him a very good vitamin, mineral and Omega Oil supplement - Melotone Syrup from Sportron International. The outcome of the diet and supplement advice was that we did put him on the GFCF diet and gave him the supplement that was recommended, although it took a long time to show us any positive results, in the end, it did! Daniel started sleeping better because he had no more stomach cramps and the Melotone Syrup helped him to calm / settle down and go to sleep naturally. He lost most of his aggressive behaviour. His vocabulary picked up because his mind was clearer. He could concentrate better. He became a lot more tolerant of physical contact with his family and the staff at the Carl du Toit Centre. He co-operated with almost everything that was required or asked of him. I have to say that as a family we agreed that we will put Daniel on the GFCF diet, but we did not agree with putting him on the baseline diet. We went about it a little differently. We knew what he was allowed to eat on his new diet, but we very gradually, over a period of 3 weeks to 1 month phased out the incorrect food and phased in the correct food. We gradually replaced food like bread from the shop with Gluten-free, home baked bread. We cooked chicken breasts into strips and he ate that instead of Vienna sausages. We gave him Lays lightly salted crisp chips instead of flavoured chips. The result was that he did not find the transition between diets traumatic and he did not stop eating because it was not all new to him. Daniel is still on his diet and still taking his Melotone Syrup and 7 years later he is still doing very well!

The third good thing that happened to us was that a group of parents and professionals came together in October 2003 for a workshop on how to manage difficult behaviours in children with Autism. The workshop was hosted by a Speech Therapist and her sister who is a Behaviour Tutor of children with Autism. This was the beginning of a Support Group for parents of children with Autism and some of the professionals working in the field of Autism. We met a few parents of children with Autism and were able to share experiences with each other. We were able to help others and be helped in return. It was very good to know that we were not alone in East London and that we only needed to pick up the phone to speak to other parents going through the same things as we were.

(The support group is still functioning today. It has undergone a few changes. We see a lot of ‘new’ parents at the support group that come to get information and help with either acceptance of their child’s condition or need help with particular issues and the ‘old’ parents often pop in if they need information or if we have a speaker talking to the group and it is in a field that interests them or will answer a question that they might have.)

I did not think that Daniel would ever wear a school uniform, but that also became a reality!

In 2006, Daniel “graduated” from the Carl du Toit Centre and moved on to a very good school, College Street Primary School. I owe this school a great, big gratitude!! He is in the school’s Partial Hearing Department. There are only 40 children in the PH Department and they are split into 4 small classes. They have very loving and caring teachers, a quiet environment and they are treated like any other normal pupil at the school. They are not discriminated against for being different. He has been at this school for the last 5 years and has shown remarkable progress in all learning areas. He takes part in almost every aspect of school life. He even takes part in physical exercise classes and swimming. He does not like to be made a fuss over at school, for example receiving any awards at school in front of all the children and staff in assembly. This is rather done in private in his classroom with his teacher. He does not do any extra mural sport, because he does not want to stay behind at school in the afternoon. He gets very upset if he knows it’s going home time after the final bell of the school day and he cannot go home.

Daniel attends a private Art School and has won a few gold certificates for some of his art work.

Our family has settled down a lot and life with Daniel is much quieter. We are able to enjoy a ‘normal’ life. I don’t know what normal is!! We still struggle with Autism, because we know that Daniel will always have Autism, but we can all manage it a lot better now.

Advice to other parents:

Read, read, read, but at some stage stop reading and start doing!

Not all advice given to parents will work for your child and your family. Don’t feel bad about trying something that you feel will work but discarding it later if it does not. Some of the best advice can sometimes leave you feeling that you have just spent more money than it was worth! Try to get as much information as possible before hand and then make an informed decision.

Epsom Salt in the bath, one and a half cups of the crystals dissolved in boiling water added to the bath water every night. Let your child play in the water for about 20 – 30 minutes. You can wash their hair in the bath, brush teeth in the bath. You can add bubble bath or bath oil to the bath water.

Spend as much time with your child as possible. Use their own interests to teach them. Barney, blocks, spinning wheels on cars, etc.

Get in their faces!!!!!! Get on the floor on their level to communicate. Use simple language and short sentences to give instructions or to talk to them. Don’t go into long instructions / explanations, rather keep it short to start with. Jump! Red ball. Big doll. Run. Stop! You can stretch your sentences and their vocabulary later.

If they are picky eaters, don’t worry about forcing the food issue. Don’t fight with them about food, give them a good supplement that will cover all the essentials. (Melotone Syrup from Sportron International) You can introduce new food or try to get them to eat healthier when you are both ready for the ‘food-fight’. But, pick your battles. Don’t fight about food if it is not important.