JJ’s Story

JJ is four years old. Eighteen months ago he was diagnosed as having severe communication and behavioural problems, severe learning difficulties with autistic tendencies. In other words my youngest child was autistic.

Like most parents/carers reading this, I had problems getting him diagnosed. I knew that he had problems by the time he was a year old. I believe that his autism was caused by his DTP jab at two months. The MMR just made him slide even further into autism, as did a course of antibiotics for a throat infection and then again for scarletina, only weeks after the MMR. My strange and non verbal child who had sleep problems, became a violent child, with the strangest eating habits and who increasingly displayed stereotypical autistic behaviour.

My quest to get him diagnosed, and therefore eligible to receive the help he needed, was equally hampered and aided by the fact that JJ’s older brother also had severe learning difficulties (these are the result of a chromosomal disorder that so far appears to be unrelated to autism.) The most common reaction to my concerns was,

“Don’t be silly, you can’t possibly have two disabled children in one family.”

The health visitor, my first port of call for help, blamed me for JJ’s problems. I didn’t know how to relate to a normal child and I was in effect making JJ disabled by the way I was treating him. That wasn’t what I needed to hear and she set me back months in trying to get help for my child.

Finally, I couldn’t ignore it any longer. JJ was autistic. Through his brother’s special needs school I had come into contact with plenty of autistic children. I went to my GP and told him that JJ was autistic and that I wanted him to be referred to a paediatrician and a speech therapist.

Knowing the system all too well from previous experience, I was not content to let the bureaucratic wheels roll at their usual slow pace. If I did, I knew that it could be a year before JJ got to see everyone he needed to. I self-referred JJ to the local portage service which had proved invaluable to his brother and I harassed the local educational psychologist daily until she agreed to come out to see JJ. Everyone who saw JJ agreed he was autistic or whatever it was currently fashionable to call autism.

The biggest break we as a family got was seeing JJ’s paediatrician. Through sheer luck, he was referred to Dr. Mike Tettenborn whose opening gambit was,

“ Did you know your son suffers from …
( autism, please let him say autism!)
… CANDIDA.”

That one word set in motion a chain of events which have transformed JJ and our family. And yes, Dr. Tettenborn did confirm that JJ was autistic.

The next three days with JJ on medication for candida were a nightmare. I would happily have locked JJ and Dr. Tettenborn in the same padded cell, but on day four, a totally different boy woke up in JJ’s place. This one, JJ mark II, looked at me, really looked at me, rather than giving me the usual unfocussed, unseeing stare, or the quick, sly looks from the corner of his eye. He was more settled, less agitated and after two weeks on medication, shortly before his third birthday, he called me Mummy. This was the little boy who up to this point had been non verbal apart from constantly screaming. He would also count to ten very fast, as his own personal mantra when life got too much for him , as it did many times a day. JJ Mark II had found his voice and has never looked back. The arm flapping, walking on tiptoes and constant spinning around stopped at about the same time.

So great was the change that JJ lost his place at the special needs nursery that his brother had attended. I fought with the LEA though and he now attends four half days a week. He may have improved a great deal but he was still an autistic boy who needed a great deal of help. The nursery had already been tried and tested by the family and I knew that this was just the help that he needed and deserved. The more pre-school help we could get him the better.

At the original meeting with Dr.Tettenborn, gluten and casein had been mentioned. A relative had sent me an article from The Express about autism and food allergies and I contacted AiA. When I read their information booklet I thought, “That’s JJ.”

Even down to the, ’Does a parent suffer from migraine?’ Ooh do I suffer! I joined AiA but I did nothing. I was reeling from having two children with very different disabilities, co-ordinating appointments down at the children’s hospital, doing portage exercises, speech therapy, housework and a million other things. I just couldn’t’’ cope with the idea of tipping our lives upside down again. JJ seemed more settled by day and I really didn’t want to rock the boat particularly as he still wasn’t sleeping very well. He would wake three to seven times a night for between half an hour and an hour at a time. He would be dripping wet with sweat and screaming the house down, gouging his ears until they bled, head banging, going rigid then convulsing and attacking me.

His daytime self-harming and attacks on me were still happening but greatly reduced in number and severity. I was too tired to even think about changing his diet. He lived on very little anyway. Bread, bread and more bread, (Marmite had been taked out of his diet when candida was diagnosed }, yoghurts, chicken nuggets, chips, milk, chicken flavoured supernoodles and cheese and onion crisps,(they had to be cheese and onion!).
A stomach bug implemented the dietary change for me. JJ was so sick that didn’t want/couldn’t keep down his customary half pint of milk before he went to bed. Giving him this milk had been the only way that I had managed to get him to sleep since he had been weaned off breast milk.

Despite getting up several times that night to clean up piles of sick that the two boys had created I realised the next day that JJ hadn’t screamed or attacked me once in the night. He had been ill before but usually with sore throats or chest infections, but however ill he was he would still self harm. For the next few nights JJ didn’t have his milk at bedtime. His sleep was better but not perfect.

As the days progressed I slowly withdrew the milk altogether and his sleep improved. Another sore throat stopped him from eating for three days and I decided that this was the time to implement the diet. Why tempt him to eat with gluten and casein rich foods when at some time I intended to wean him off them?

JJ went cold turkey (or so I thought) and I don’t recommend this! I have since learned that the better way is to take out the casein then the gluten but when I make a decision I like to get on with it! Things wern’t as bad as I had been led to believe. That was until I spoke to Rosemary Kessick to get some information (and also to boast how easy I had found it!). Her words were,

” Hula Hoops, he’s eating Hula Hoops isn’t he?”

Yes he was, and I was proud of this. They weren’t cheese and onion flavour, they were ready salted and they were stamped gluten free. That’s how I came to learn about the perils of MSG and all the other things the hospital dietician forgot(or did not know) to tell me. Of course the next week was a different story and I adopted a siege mentality. We didn’t go out and no-one was welcome round. It wasn’t pleasant but it wasn’t as bad as I thought it would be. The change in JJ was almost instant.

So on to JJ Mark III. Eight months into the gf/cf diet and he is never violent, never self harms or attacks me. He sleeps eleven hours a night and would probably sleep longer if his brother would let him. He finally knows he has a brother rather than an annoyingly mobile piece of furniture and they play and argue together. They really play together and are the best of friends, they compensate wonderfully for each other’s difficulties. In fact, they have just chosen to move into the same bedroom together. JJ can talk the hind leg off a donkey, (a family trait!).

Yes, his speech is peculiar, but he can usually communicate his needs and we can have stilted conversations, as long as they are JJ led. His verbal understanding is getting very good if instructions are kept short and simple. His vocabulary is huge though sometimes the way he uses it can be comical or downright embarrassing. JJ Mark I, a solitary child, locked in his own world not recognising anyone, not even me is now an extremely loving and affectionate child who is friendly to everyone.

Eye contact, have I mentioned eye contact? I defy anyone to notice anything out of the ordinary there. He toilet trained himself, (night and day) in just over a week with no help from me. This is the boy who was scared of toilets. His rituals have disappeared. He is curious about everything. Everything at the moment is what and who – heaven help me when we get to the why stage! And he is so clever. That is not just a mother’s pride talking. That is from the mouths of the professionals.

Yet he is still autistic, there are definite traits remaining, he still finds it impossible to acknowledge his peers. His speech is still very idiosyncratic and changes in routine and places are very difficult for him. He still mainly eats what he did before, but now it is the gf/cf versions. He appears to be very scared of food and he is still completely unable to filter out sounds which makes most situations, especially classroom situations, difficult for him. He can often be found at nursery crying silent tears, unable to express his unhappiness and confusion, although he loves attending.

We have had setbacks to the diet. He ate some playdough and reverted to JJ Mark II. Violence, agitation, inability to concentrate, loss of eye contact and severe sleep problems ensued. Nursery threw away the playdough and replaced it with the gluten free version for all the children to use. In a way it was okay because I had proof that it was the diet causing all these marvellous Improvements and the changes to JJ weren’t as a result of natural development. He also ate some dried rabbit food, now under lock and key!

There are loads of other amazing changes to JJ, large and small. These are just edited highlights. It has not only made a huge difference to JJ but to all the family.

So to all involved with AiA, especially Rosemary and Meryll, thank you. Thanks for all the brick bats you’ve taken over the years that you have ignored. Thank you for keeping on battling to get the help our children need and deserve. And the biggest thank you of all for being there to listen and advise when things seem impossible. You really have made a huge difference. JJ is living proof of that.

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