Joshua and His Journey

Joshua and His Journey

Early health problems

Joshua was diagnosed with autism at the age of 22 months. He was born on time by rapid delivery and had passed meconium in the womb due to foetal distress. He breast fed well, he gained weight, he slept but he didn’t cry until his teeth erupted. At the time we just felt he was a contented, laid back baby!!

The first 22 months of his life had been filled with hearing tests, the insertion of grommets due to glue ear, slow development although nothing massively off the guideline limits for sitting and walking, and lots of referrals to see specialists. He sat at 11 months, crawled at 15 months and with the aid of some physiotherapy, walked at 22 months.

When I had given him a cup of milk his behaviour had deteriorated

At aged 3 ½, I had decided to look at Joshua’s diet. I had been reading about the gluten and casein free diet and felt that it was worth a try. He had been diagnosed as having milk intolerance at 15 months of age, after a few bouts of diarrhoea and vomiting so he had not been having milk products for quite some time.

I had noticed one day, that when I had given him a cup of milk his behaviour had deteriorated – he had become very upset and full of tantrums. He had always had loose stools which had been diagnosed as “toddler diarrhoea”.

Trialling the diet – removing gluten and artificial additives

I chose to trial the diet for 6 months feeling that if it was going to make any difference to hjm, we would see it within that time frame. I removed gluten first and amazing things happened – Joshua woke up. He would begin to notice things that were around him, the flowers, the trees, the sun in the sky.

His “toddler diarrhoea” also disappeared.

6 months later we modified his diet some more and removed anything with MSG in it. It was amazing. He suddenly became more flexible with his meal times. We had always felt that he got grumpy when he was hungry and was always a lot happier when full.

After removing gluten, we realised that Joshua had been ruled by his gluten addiction – lows before his meal and highs after a meal with gluten.

Over the following months I also introduced fish oils and pro-biotics into Joshua’s diet – I was very lucky with my son, he learnt to swallow tablets by the age of 4!! Joshua began to develop more and his eye contact improved.

Occupational therapy for coordination problems

I began to pay for a private Occupational Therapist to treat Joshua for Sensory Integration Disorder. Weekly, I would trek the 1 ½ hour journey from Leicester to Birmingham to see an OT specialist in this area. In her studio, his balance and co-ordination would be challenged by providing him with obstacle courses, different types of swings and scooter boards. He loved these trips and they continued for 4 ½ years.

During this time Joshua became more balanced and co-ordinated with his sitting, walking and his running.

Digestive enzymes were key

At age 5, a book was recommended to me titled “Enzymes for Autism….” by Karen DeFelice. I quickly bought high quality digestive enzymes and started Joshua on these. We noticed differences with his eye contact, his bowel movements and his general development. He still takes these 5 years later.

When Joshua was 6 years old I attended my first Treating Autism conference in Bournemouth. Here I met like minded parents who were seeking help for their sons and daughters. At this conference I realised that by using the diet I had begun my journey down a road from which I would never look back.

At aged 7 we started some oregano oil – Joshua suddenly began to toilet train!! It was only 3 weeks into the dosing so my guess was that he had candida in his bladder which irritated his system – once this had “died off” his bladder could be trained.

For 2 years, he suffered from monthly ear infections. In November 2009, when Joshua was 8 ½, his tonsils were removed. 2 weeks later he was back to his normal happy self. The following year his ear infection rate decreased by 66% – he had 3 in one year.

At this time I felt Joshua fitted the profile of a child with PANDAS. Many months later we achieved a referral to see an immunologist about Joshua’s repeated ear infections. His blood tests showed that he had low pneumococcal titres. Through his paediatrician, I asked for a referral to see a specialist about PANDAS.

We were referred to the Maudsley Hospital, Specialist CAMHS service in London. After an assessment here, it was recommended that Joshua commence on an anti-depressant widely used in OCD, but in his case, prescribed to see if it would reduce his anxiety and any challenging behaviour related to this. I feel that Joshua is more relaxed on this medication and some anxiety has reduced.

He is able to handle some change better than he used to and his angry episodes have lessened dramatically. As for the diagnosis of PANDAS – this is still a debate.

Our charity is run by parents and we value parent experience. We encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.

Fighting for better autism services, and better diagnosis

A few months ago, I went to tribunal again to challenge the statement content which Joshua had had for 5 years. I achieved the diagnosis of verbal dyspraxia to be listed in part 2 of his statement and two 20 minute sessions per week with a speech and language therapist (in small groups or individually) in part 3.

I also achieved a physical activity programme to be put in place between Joshua’s lessons to give him a sensory diet whilst at school which should not only help his co-ordination but help his concentration whilst in the classroom.

Joshua is now 10 ½ years old. He still has Autistic Spectrum Disorder. In fact his diagnostic list is growing – he has developmental co-ordination disorder, severe learning difficulties, anxiety, verbal dyspraxia and severe speech, language and communication difficulties, hearing impairment associated with repeated ear infections and sensory integration difficulties. None of these diagnoses came willingly from the therapists – I have always diagnosed my son first and then produced the evidence that these conditions were what my son had.

Over the last few years his development has made him become more grown up and develop more independence. He is self caring with his toileting needs and can be trusted to not eat the soap, most of the time! He needs minimal assistance to get himself dressed. He will eat independently with a special fork and bowl and bring it back to the kitchen when he has finished. He has naturally grown out of DVD’s like Balamory, Tweenies and Fimbles, choosing instead to watch musicals like Oliver, Annie and Joseph. He also loves to watch Riverdance. He has stopped sucking his thumb and leaves his comforters in his bedroom when he gets up in the morning. He follows instructions much better and has developed a wicked sense of humour. The other week at football club, one of the older lads kicked the football over the goal, above some trees into the field behind the pitch. Joshua burst out laughing, looked at me and signed “silly”.

Our autism journey has been very long, full of twists and turns, sometimes I went uphill and sometimes I went down. All the things I have tried have helped Joshua to develop in some way, shape or form. I have not achieved his diagnosis being removed but I now have a better picture of my son and a child who wants to develop. He is a very physically active young man, he loves swimming, cycling on his tricycle, swings, zip wires, trampolining, playing on his computer, listening to music. He has respite on alternate weekends at a residential placement and goes to a dyspraxia gym club one evening per week. He has also developed a love of football attending a football club for children with special needs. He occupies himself for long periods of time and has very good eye contact once comfortable with people. Our autism journey continues….

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