J’s journey of hope
- Century-old drug offers new hope for autism treatment
- Autism charity calls for better medical care for people “left in pain or to die prematurely”
- Our latest publication is out: Identifying and Managing Seizures in Autism
- Treating Autism coming to Basildon, ESSEX
- Treating Autism Roadshow coming to Crawley, Sussex
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- September 2010
Our story of hope
I believe J was born healthy albeit after a very long 40-hour labor. Upon delivery his Apgar score was good although his head was elongated having spent so long traveling down the birth canal.
J was unable to latch on to breast feed so I formula fed him from birth till 12 months when I swapped his baby formula to a toddler formula.
I remember J would only ever drink his milk lying in my arms with his back arched so his head was up side down. My health visitor at the time thought it was very unusual but never questioned that Josh may be in abdominal discomfort or could be allergic to the formula. Although J was rarely sick as a baby I do remember that he had colic and his bowels alternated from constipation to loose stools so I now wonder if the back arching was due to his casein sensitivity.
From the moment J was born I am sad to say that although he looked healthy he was always unhappy. I found myself having to constantly rock and bounce to calm him and keep him happy. If I didn’t hold him and jig him he would cry. I had him continuously strapped to me and even ate my food sitting bouncing him in his pouch on a gym ball.
J had all the normal childhood vaccinations except his MMR booster and aside from developing a high temperature and lethargy for 24 hours with one of them (I can’t remember which) there was no marked regression.
J appeared in a fog and didn’t reach milestones such as pointing or waving. He was very slow to eat finger foods, use a fork and he never crawled. He walked at 12 months and from learning to walk he was constantly on the move running, bouncing and spinning without ever getting dizzy or any awareness for his own safety. I was continuously on edge and trying to keep up and keep him safe was becoming increasingly difficult.
J began talking at 2 but acquired language in an unusual way. He would repeat back what I said to him (echolalia) but was unable to form his own sentences.
J learnt his whole alphabet and would label colors and complex shapes but he had no ‘functional’ language and was not able to express his needs. He was also unable to point or use effective body language so we just had to guess if he was hungry or thirsty.
At two and a half OCD immerged and J became fixated with numbers. By the age of 3 he knew all his times tables. His ability to do this ‘Wowed’ everyone and enabled me to justify in my mind why he hadn’t reached the typical childhood milestones and why he was so unhappy all the time. He was obviously a genius and his body just needed to catch up with his brain! With so many well meaning friends and family to keep me in denial and plenty of people to amaze with his brilliance I had no idea of the war raging inside his little body.
Around this time J also began having sudden and unexplained outbursts of fear and anger. He would sometimes be sitting on the sofa and be seemingly relaxed when he would just start screaming about something that had happened in the past. His upset was always prolonged and he just seemed unable to calm down. It was as if he had a sudden surge of adrenalin just dumped it his body with no external trigger or explanation. J also developed lots of seemingly irrational fears which I now know was due to visual distortion of certain objects.
Aged 3 J developed a cough and high temperature and was treated for ‘bird flu’ with Tamiflu. After this treatment josh went through a prolonged period (20 months) or having no infections. At this time he was exposed through play with other children with colds and illness but surprisingly never caught anything. Everyone including myself thought J had ‘super immunity’.
At this time his visual problems were at there height. He couldn’t cope with pictures on walls and would knock them off. He would also attack the TV because certain images frightened him. He also developed a fear of shadows and outside lines of drawings.
We stopped watching TV and took all our pictures and photographs down in the house. We removed everything he was afraid of but still J was having up to 20 meltdowns a day in a very controlled environment.
I was struggling to cope but reassured myself that it was still the “terrible two’s” and that he would grow out of it. Family members and friends said I was too attentive towards him and that it was attention seeking which would pass if I was firmer. We just carried on putting one foot in front of another.
At 3 and a half the visual disturbance began to improve and life was becoming easier forJ. Conscious that he was behind socially we decided to try him at preschool. After 2 hours trial session the teacher listed all J’s “problems” and told me I needed to have him assessed.
I was furious with her and concluded that it was the preschool with the problem and not J. I decided to trial him at a less structured nursery but it wasn’t long before they identified their concerns about J and placed him on an IEP and once again advised having him assessed.
My frantic internet searches began trying to identify what was wrong with him. The staff at the nursery were sensitive to my feelings and kind to me when I would desperately self diagnose J with lesser problems such as ‘sensory processing’ problems and ADHD but everyone knew he had Autism.
J was only at the nursery for two months when he developed his sound sensitivity. His visual disturbance had been replaced by acute sound sensitivity and once again he was in a constant state of anxiety, pain and ‘fight and flight’.
His ears became so painful we were no longer able to listen to music, have volume the up on the TV or even boil the kettle or flush the toilet. In the spring we would run from the house to the car because the birds would sing too loudly for him. Life outside of the home became impossible and we began avoiding going out.
Even though staff assured me that J was fine I was concerned about how he was coping at the nursery so I moved him to a very small quiet preschool where I thought he would cope better.
Sadly the staff’s idea of ‘inclusion’ involved taking J to big school assembly every Friday morning. They assured me he coped well with it but when I collected him one Friday from a different member of staff and I asked how he got on her reply was, “really well, not like usual when he kicks and screams”!
My heart broke in two when I heard this knowing that J at the age of 3 and a half couldn’t tell me how afraid he was and I had stupidly trusted them to care for him. I removed him from the preschool immediately.
When we left the staff gave me his ‘learning journal’. It was full of pictures of him smiling and looking happy but as his mother I could see beyond the smile. Inside I found a comment from a staff member which read,
“J tends to communicate through wandering around the room aimlessly crying, sometimes saying “too loud” or “J’s lonely”.
Why didn’t anyone tell me??
Those words will always haunt me.
With nowhere left to hide from the truth we began the formal assessment process. The consultant community pediatrician saw J twice. She made a detailed report documenting his history and her clinical observations. She informed me that the third assessment would be with a range of professionals, which would then give us a diagnosis. I told her that I had done my research and that I knew J had autism. She said that was her professional opinion too and the third assessment was just a formality and confirmation of this.
She gave us a NAS leaflet and a couple of book references to read about autism and said that it wouldn’t be too long before the next appointment.
As a psychiatric nurse and having worked in the NHS for years I knew exactly what J having a diagnosis of Autism meant. I knew the NHS saw Autism as an untreatable condition and I knew that the ‘services’ J would receive from having the label would not outweigh the life long discrimination he could possibly face. I worried about his job prospects, mortgages and insurance cover.
As a child I had seen first hand how my mother was treated and ridiculed by society for having mental health problems and I wasn’t about to let it happen to my son without a fight.
I was keen to protect J’s medical records from a NHS diagnosis but knew that my husband and family would need a professional diagnosis in order to accept that J had Autism.
In December 2009 we got a private diagnosis from a clinical psychologist who confirmed that J did meet the DSM criteria for Autistic Spectrum disorder.
J’s road to recovery
On the 25th of January 2010 (J’s birthday) I attended the sonrise start up course in London for 1 week. If I’m honest it all looked a bit too good to be true and to my mind the advertising was a little cheesy. It was also expensive but I trusted the recommendation and nobody else was offering any hope so I didn’t have a choice. It was the best decision I have ever made. I went feeling like my world was falling apart and I returned feeling like I could change the world.
They instilled the belief in me that recovery is possible and they gave me the skills and knowledge I needed to take control of the situation and get my son back.
Within a week of my return we had vacated our bedroom and created our sonrise room. Then the real work began of 1:1 intensive interaction for 6 hours a day. We ploughed all our energy into the program so there was no time left for the anxiety and fear of the future that had been filling my days.
The therapy began to show results that spurred us on and kept us fighting.
At the age of 4 and 2 months into the program Josh asked his first question!!!
“What is 6 x 7?”
I will never forget that amazing moment because I knew we were winning and everyday we were getting closer and closer.
I was becoming increasingly concerned about J’s diet because he would only eat a small range of junk food. He looked pale and thin and had continuous dark circles under his eyes. I did a search on the Internet and to my amazement found a nutritionist who specialized in ‘Treating Autism’ and was trained in DAN. I had never heard of DAN but anything standing for ‘Defeat Autism Now’ sounded fantastic to me so I thought it was worth the 3-hour trip and lengthy questionnaire filling to go and see him.
He took one look at J with his dilated pupils and heightened state of anxiety and told me he was under extreme adrenal stress. He looked at his pale skinny body and told me that his body was unable to absorb essential vitamins, minerals and fatty acids. He put J on a range of supplements and ran a range of tests that confirmed his diagnosis along with numerous other problems that needed to be addressed. Along with the supplements the nutritionist advised dietary restrictions to reduce allergy (no gluten, casein, soy, sugar all organic etc, etc.) Within 3 days of being casein free J became so much more aware and responsive. I knew the diet was working which gave me the motivation to push on with it.
After only two months of full dietary restrictions and supplementation J’s hyperactivity had completely calmed down and cognitively he was much more aware. Every time I called his name and he actually answered I was amazed. J was like a different child because without the ‘fog’ he now had the ability to learn!
At 4.9 months I took J to a hospital specializing in allergy that has an autism clinic. We saw a brilliant Doctor who ran various tests. He identified extremely low Glutathione, build up of pesticides and Arsenic, suppressed immunity evidenced by low lymphocytes and monocytes, H-pylori, yeast overgrowth, parasites as well as various other abnormalities in desperate need of treatment.
J was prescribed Nystatin to treat yeast overgrowth and antibiotics to treat the bacterial overgrowth and H-Pylori. He put J on various supplements to treat more nutritional deficiencies and high amounts of antioxidants to clear the pesticide build up. He also prescribed Glutathione cream and melatonin to help regulate J’s sleep. J responded well and had another developmental leap forward.
In February J under went ‘Autonomic monitoring’ of his brain. The results showed several abnormalities including abnormal spontaneous brainstem activity and arterial blood flow and low Parasympathetic nervous system. This explains J’s unexplained heightened stress response and over reactions to minor triggers. The test identified baseline levels of blood gases being well below normal (34.0mmHg) indicating peripheral tissue asphyxia.
J responded significantly to re-oxygenation therapy in the first week and became much much more alert and happy.
The Dr thought his immediate responsiveness was indicative that J had vascular endothelial dysfunction and commenced him on more supplements to enhance blood flow and circulation.
J’s parasympathetic nervous system and vagal tone has now normalized.
J now/ goals for the future
J isn’t frightened anymore and he is relaxed in his body and mind. His mood has stabilized and he is now a happy typical little boy full love and fun.
J’s visual disturbance has gone and his sound sensitivity considerably lessened.
J is now relaxed around usual noise and enjoys nothing more than turning the music up and dancing around the kitchen to ‘moves like Jagger’!
J is still worried about some sounds that he associates with hurting his ears but we are working with him on a psychological level to help him overcome these fears. J has made so much progress he now looks forward to going out and only uses his ear defenders when he predicts the environment will be too noisy.
J is now a very sociable little boy and loves being around people. He still has difficulty being around groups of children because he has traumatic memories from preschool. We understand it will take time for J to gain confidence with this but because of his general sociability with have no doubt this will come.
With dietary intervention J’s extreme hyperactivity has also calmed down considerably and is no longer a problem. He does still have features of ADD but with continuing support through supplementation and home education his concentration levels are improving.
Josh still has OCD but to a greatly reduced extent. If J’s history wasn’t known I believe he would be considered to have ‘special interests’ in a variety or areas rather than OCD now.
Thanks to a loving home school environment educationally J is doing so well. At the age of 5 he was an independent reader and he happily sits to write his own mini imaginative stories. He also remembers his times tables which is very impressive when the LEA come and check up on us 😉
Thanks to biomedical intervention and the support of so many other mums and dads on this same journey J is now just like most boys of his age. He is a happy cheeky little boy with a brilliant sense of humor who loves nothing more than bottom jokes and playing tricks on people.
He is learning to swim and is really proud of himself for putting his head under the water. Before his lesson today he announced that he is going to dive in the pool and earn himself some Booja Booja ice cream!!
I don’t know if J will ever be fully recovered from Autism but what I do know is that in the space of 2 years with biomedical intervention we have already achieved what the ‘professionals’ told us was impossible.
J has good days and bad days but at this time considering how unwell he was I would say he is now 90% recovered.
More importantly for the first time in 5 years his body is healthier and as a result he is happy and at peace with himself.Visit this page for more Parents’ Stories of Hope
Our charity is run by parents and we value parent experience. As such, 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.