We posted last month about Autism awareness month there was a lot of discussion on our Facebook page about this at the time and the issues that some parents are facing. Following on from this we have today’s guest post from Alison, a mother of two children, both with Autism, she has been kind enough to share her experiences with us.
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Like most couples, we looked forward to the birth of our first child with excitement and a sense of joy. Little did we know what a life changing event his arrival would be – our lives were going to change forever.
Our son Sam arrived in December 1996 and seemed to develop normally during his first 2 years. When he was just over 2, our beautiful daughter Beth was born and we were over the moon with our family. Bringing Beth home from hospital, I noticed that Sam did not really take much notice of her. During the next 6 months there were lots of different things we noticed that raised concerns about Sam. He had a wooden train set for his 2nd birthday and he loved it. However, we noticed that he seemed to lie down on the floor with his face very close to the track and run the trains very near to his eyes. You could walk into a room and Sam did not really notice you. If you called Sam’s name he did not react or turn around. The turning point for us was a holiday to Ireland when Beth was 3 months old. We went with family, including our nephew who was 4 months younger than Sam. The contrast between the two boys was really obvious. Sam was not really talking and appeared to be ‘in his own world’.
I spoke to the health visitor and expressed my concerns about Sam. She referred Sam for a Speech and Language assessment. The Speech and Language Therapist decided that Sam may have autism and referred him to a Paediatrician. I had never really heard of autism and had no idea about what this might mean. We attended a 2 day assessment at the Child Development Centre in Northampton and Sam saw a number of different professionals over the 2 days. They were looking at all aspects of his development – his physical development, language development and social skills. We returned 2 weeks later for feedback and received the news that Sam had Autistic Spectrum Disorder. I have to say I was broken hearted. I read up on Autism and realised that this was life changing for Sam and for us.
Autism means a person has difficulties in 3 areas:
Communication
Social Interaction
Flexibility of thought/Imagination
One of the things that Sam found most difficult was communicating his needs, so that was the focus for me. I finished my part-time teaching job and we decided that my main focus would be input for Sam to help him make as much progress as he could.
Children with autism often find it difficult to follow spoken language but respond much more to pictures, photographs and simple spoken language. We started using a simple daily schedule with pictures of what we were going to do during the day. I took photographs of places we visited regularly and used them on the schedule. Sam liked things to stay the same, it helped him cope if he could keep the same routines.
Sam started at nursery and we managed to get an assessment done for him to get a Statement of Special Educational Needs ready for starting school. We looked at a number of different schools and decided to go for a mainstream school with a DSP (Designated Special Provision). This is a unit attached to the school which provides lots of structure and a quiet environment. Sam was able to go into some of the lessons in the reception class.
Whilst Sam was settling into school our concerns were raised for Beth. Although she had appeared to be progressing fine up to the age of about 18 months, by the age of 2 she was following a very similar pattern to Sam. Her language was not developing and she had poor eye contact and social skills. It took me longer to accept that there may be a problem with Beth. I could not bear to think that we would have to go through the same heartache twice. When she was just over 2 I returned to the Health visitor and chatted about my concerns. It was the same health visitor I had seem with Sam and we sat and sobbed together…..it was so hard! Beth was referred to the Child Development Centre and had a two day assessment. The feedback confirmed that they thought she had autism – they wanted to wait until she was 3 years old to confirm this, in case it was language delay. When she returned for another assessment at 3, autism was confirmed. We put the same support in place as we had Sam. Language and communication was one of Beth’s main areas of difficulty. Due to the difficulties with language, toilet training was a real problem. Overall it took about 4-5 years – we had photos of toilets and I used to take Beth to the toilet every hour wherever we were. Beth would go to the toilet if you took her, but could not ask to go or take herself. We got through a lot of carpet cleaner!! Eventually, one day, she just took herself to the toilet and went on her own. I nearly fainted with delight – she was over 7 years old…..you need lots of patience with autistic children.
One of the areas we looked at was diet and autism. Some children with autism have difficulties with dairy and wheat so we read up on some research being done by the Autism Research Unit in Sunderland. They analyse urine samples and are able to advise if the individual has opioid peptides in their urine. Presence of these peptides indicates they have a problem with dairy and wheat. We have a very strong history of allergy in the family so decided to explore this. Both children came back with positive test results. We decided to remove dairy and wheat from their diet. I soon became an expert at baking biscuits and cakes with no dairy or wheat in.
Life has followed that pattern – Sam and Beth achieve little steps but it takes them much longer to get there. They have been fortunate to have the nurture and help of some fantastic Teaching Assistants. They both now attend Northgate School in Northampton. It is a special school and they are both flourishing in a very supportive environment. They are now aged 15 and 13 – the gap between them and their peers has widened, but we are more able to work with their strengths and appreciate what makes them special. It is hard work – I would be lying if I said otherwise, but it is easier than it was. Sam’s language has developed well and we can have a simple conversation with him now. He still struggles with social interactions but continues to make progress. Beth still has limited language but she is happier than she was and gets less frustrated with the world than she used to. We have been on a very steep learning curve and there is more to come – we continue to learn as much as we can to help Sam and Beth reach their full potential and lead happy lives, with the support of others.










