Not a good year
This was the one of the hardest years we've had to deal with since Michael was born. As such I've put off doing this page, because it stirs up a lot of painful emotions.
The winter came, and Michael despite having the flu vaccination and the pneumonia vaccination, caught pneumonia for Christmas. He was admitted a week before Christmas we were hopeful that a few days in hospital and he would be home..........
It soon became apparent that the hospital were, in our opinion "sitting on him," All the time Michael was deteriorating, in order to get a decent saturation, and I mean @94, Michael needed 5 litres of oxygen up his nose. I got into trouble for turning his 02 up!! I came back from opening bottles for his over-night feed to find Michael's sat's were 58%, alarms going off, and no sign of a nurse.
By the 23rd, Michael was in 17 litres of 02 through a face mask and 3 litres via nasal cannula. I was worried sick about him. So much so that I rang his Cardiologist, A short time later I got a telephone call from his Resp Consultant who asked if they were looking to transfer Michael to PICU. He offered to ring and speak to the Dr's and see what was going on. I felt reassured knowing that he was going to call and discuss the situation with them, and that something would be resolved, and Michael would get the care he needed.
When I got up to the hospital that evening I spoke to a Dr who told me that Michael was fine, that he was not going anywhere until he stopped breathing for himself. He would not be going to PICU, there was no need for him to go, in his current condition.
At that point, had I had an 02 cylinder with me, I would have removed Michael from out of the bed and taken him to another hospital. I left in tears. I was so angry and so concerned about my son, and felt that my concerns were not being taken on board - again we were not being listened to and Michael was suffering.
Martin was of the impression that the Dr's knew what they were doing and that I needed to have some faith in them..........faith was something I lost a long time ago.
The following morning I went into the hospital, and saw the Consultant that Michael had had since he was 10 weeks old, needless to say we had a very long conversation about the lack of care that Michael was receiving, no chest x-rays, no blood tests, no antibiotics, no steroids, no physiotherapy.........the list goes on.
Within half an hour Michael had all of the above ordered. I sat on the ward on Christmas Eve cuddling a very sick child, who was I felt heading back into the world of Resp Failure, whilst carol singers sang Christmas carols. No matter how hard I tried I could not stop the tears from falling...........life is not supposed to be like this.
On Christmas Day, although still not well, and still in a fairly large amount of 02 about 3 litres via nasal cannula, Michael was more together during the day, and did take an interest in Santa visiting the ward, he still slept a lot during the day, but it appeared as if our son was gradually returning to us.
By Boxing Day he was well and truly back on his feet and his 02 requirements had come right down, He was managing in just under a litre of 02, and seemed so much better in himself that I asked to take him home. This led to another disagreement when a Dr stated that we couldn't take him home whilst still in 02....................
If I learnt anything from the whole experience it is that Dr's aren't always right that as parents we know our Children better than they do, I no longer take no for an answer and I will fight Michael's corner tooth and nail...........we're I to go through the whole thing again I would next time deal with things very differently, I would insist that Michael was treated and not left with a "virus" to deteriorate.
We keep our own Sat's records, and 02 records........because those kept are not always accurate. I know my son I know he is not asthmatic, I know Neb's and asthma treatments do not work with him, I know antibiotics and steroids, physio etc does. I know he goes down hill with a bang, but he also gets better the same way, he can require 3 litres of 02 at 9am, and be off by 10am.
Any faith I had in our local hospital vanished during those ten days, and I now question every decision they make, I do not take the 'we know better than you do' attitude that some Dr's seem to have.
I put a long and formal complaint in about the whole situation and the way Michael was not treated during his stay, and came to an uneasy truce with the Dr who had made sure that Michael was treated eventually.
I also asked for, and got a referral back to his Resp Consultant.
The Neurologist
We went to see a neurologist in the February, he examined Michael, and said that he could see no evidence of Cerebral Palsy which was good news.
However I asked for a MRI and was told that we wouldn't be getting one. Why?? Because he believed that Michael had "Autistic Tendencies". He told us that the gestation Michael was born at was one of the worst in terms of brain development, anything less that 28 weeks, the brain was not formed, and still forming when Michael was born. In his experience his said that babies of this gestation either go one way or the other, they're either over friendly or have reduced interaction capabilities. Being born so early affects the brains development.
He suggested that we go back to our Child Development Centre and request a referral for an Assessment of Michael's Social Skills and Development. He also suggested that we re-introduce Michael's Bolus feeds as Michael was very under-weight.
From Bad to Worse
My Health Visitor had suggested a referral to the Child and Adolescent Mental Health Services or CAMH, for some help in dealing with some of Michael's more dangerous behaviours, like switching the cooker on and cooking soup still in the tin.
Michael as he got more able, ie able to remove his clothes soon showed that he had a preference for being naked, not only this but as he wasn't potty trained he also started smearing. I would go to the toilet and come back to find the windows and the TV covered in faeces. One morning I went upstairs to get school clothes for his older brother and by the time I got down stairs Michael had left a trail all over the downstairs of the house.........having ridden a push-bike through it.
I am quite happy to admit that my coping skills were minimal at this point.....I was on long-term sick with Depression and taking anti-depressants, getting stronger every day and starting to feel as if I could cope again when the appointment for CAMH came through.
We went to the appointment, Michael minus his shoes having removed them in the town centre, nothing new there, that had been happening as long as he'd worn shoes. I remember it was raining. When I finally managed to get two small children up to the first floor I was met by a family therapist, who showed us into a small room...................
I will be here all night talking about that appointment, so I will break it down........the long and the short of it is that it didn't matter what I said, nor how many times I said it the therapist was not listening. She was not prepared to take into account Michael's prematurity nor any of the things that he had experienced whilst growing and developing. It didn't count......only in the way it affected me, and my depression, and therefore how this affected my relationship with Michael.
When I mentioned Michael's Developmental Delay, I was told that unless I treated Michael like a "normal 3 year old he would never be a normal 3 year old" When I questioned how that worked when he didn't have the understanding of a "normal" 3 year old - the reply was that he never would unless I treated him as such. After going round in circles for several minutes with this I gave up.
There were so many things that she saw as an issue, that were part and parcel of day to day life with Michael, for example not wanting to keep his shoes and clothes on, his not eating orally only via his g-peg. As for the fecal smearing that became my fault too, apparently because I didn't jump up and down, and scream and shout I was practically encouraging him to defecate all over the carpets.
The long and the short of our hour long consultation was that Michael's issues were to do with me, and my depression and that if I were not depressed then Michael would be fine.
When I left there I hit rock bottom.
The Truth
The appointment for the neurodevelopment team at one of the London Children's Hospitals, was 3 months after our appointment at CAMH, I was devastated and reeled for weeks over the session that we'd had at CAMH. To the point where I seriously considered handing Michael over to Social Services, because it was obviously my relationship with him that was the problem.
But given the number of people involved in our life none of whom have ever questioned my relationship with him I should perhaps have realised slightly sooner that the therapist at CAMH didn't know what she was talking about.
We spent a full day at the Neurodevelopment Centre where Michael's background history, and family history and all our concerns were noted and Michael was put through a through assessment of his development in all areas.
The end result was a diagnosis of Autistic Spectrum Disorder. Michael was 3 years and 10 months old.
I knew what was coming as we all sat together in that little room to discuss their findings, but I have to say I was devastated, relieved, but devastated.
How many times can this whole situation wipe the floor with me????
I still don't know how I felt after the diagnosis, I guess a mixture of sadness and relief.........
The sadness comes in that we kissed ever having "normal" good-bye that day, and once again I'm left grieving for the baby/child I never had. If you have ever been in this situation you will understand where I'm coming from here. If you haven't you may find this concept a little difficult to understand
The relief comes in knowing that it wasn't me, and my relationship with Michael that was causing his problems, at last we had an answer and the hope was that this would then open the doors to the help and support that we were so desperate for.
Autism Diagnosis
What is autism?
Autism is a developmental disability that affects the way a person communicates and interacts with other people.
People with autism cannot relate to others in a meaningful way. They also have trouble making sense of the world at large.
As a result, their ability to develop friendships is impaired. They also have a limited capacity to understand other people's feelings.
Autism is often also associated with learning disabilities.
Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights.
There seems to be no clear boundaries, order or meaning to anything.
A large part of life is spent just trying to work out the pattern behind everything.
What are the characteristics of autism?
The National Autistic Society lists three major areas which cause people with autism serious problems. They are:
- Social interaction - difficulty with social relationships, for example appearing aloof and indifferent to other people
- Social communication - difficulty with verbal and non-verbal communication, for example not really understanding the meaning of gestures, facial expressions or tone of voice
- Imagination - difficulty in the development of play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively
Autism is also associated with repetitive behaviour and a refusal to change routine.
Picking up the pieces
I finally started to admit that the CAMH Consultation was wrong, and then I got angry.
I arranged to go into CAMH to look at the file, I took a copy of the notes made by the Therapist which confirmed everything that I had felt - the therapist saw Michael's difficulties as my fault.
Yet another letter of complaint went in, a very long letter of complaint, which resulted in my receiving a letter back full of platitudes "there there, now shut up and go away" type letter.
With my new found strength I refused to accept it, and several more letters were exchanged with each of my letters becoming more and more adamant that the advice we had been given was wrong. We now had an Autism Dx to back me in my argument. I never shied away from the fact that I had been depressed and I am more than happy to accept that maybe some of my feelings rubbed off on my children, my argument was more based on if my depression was that bad, why were my other children relatively normal and not behaving in a similar way. More importantly that Michael's medical history could not be ignored because it didn't fit her preconceived ideas as to what "My problem was"
This finally resulted in a meeting between myself and the manager of the unit, where I was able to lay it on the line, about the way I was treated and the total inappropriateness of the advice we were given.
I received a letter of apology, an admission as far as I'm concerned that the advice we received was wrong.
Other things happening.
Blood tests showed that Michael has a immunodeficiency in relation to pneumonia, this explains why despite having the pneumovax, he has still caught pneumonia 5 times in the last year. We have been told that Michael needs to have another vaccination.
There is only one problem with this, this information was made available to us, letters written to the GP, we booked the appt, went for the vaccine only to discover the surgery did not have the vaccine and couldn't get hold of it. This led to me visiting several pharmacies trying to get hold of the vaccine, with no joy. I was advised by one pharmacy that the vaccine was in short supply, as in was not available until next year - too late for Michael.
So I went back to the Community Nurses in a panic, they too tried ringing round to see if they could get the vaccine for Michael with no luck. It then transpired there was 1 vaccination left in the hospital. Michael got his vaccination just before Christmas, but not until he'd had pneumonia one more time!!
Michael also started going to playgroup two mornings a week during this year, the Education Department provided funding for 1-1 support for 5 hours a week. He really enjoyed it.
We were still going to the Opportunity Class one afternoon a week too.
The Education Dept set the Educational Statement process in motion ready for Michael starting Nursery 5 mornings a week from the September. This meant that Michael would get all the support he needed in class, not only to keep him safe but to keep the others safe, and Michael focused.
That was a fun experience, the educational statement parents perspective 9 typed pages of A4 dealing with Michael's medical history and his developmental delays.
Michael started Nursery 5 mornings a week from Sept 03. He had 1-1 support who was amazing with him, and during the time she worked with him he really came on in leaps and bounds. There was a lot of input on communication and introducing others to him, learning to take turns and share. His one-to-one describes Michael as having a wicked sense of humour.
From my point of view it is amazing having 5 mornings a week with Michael out of the house, it means that I can spend some quality time with his sister, without having to worry about what he is doing or where he is. It also means that I can do the things I am not able to do with him around, like catch up on housework.
Michael still refuses point blank to wear clothes, although keeping them on outside of the house is becoming less and less of an issue, which is positive.
The tempers and stress periods are slowly improving as his language and communication improves.
The smearing is a kind of on-off affair, he may do this for a couple of months and then stop, for a while and then suddenly it starts again. I cannot explain how much I am looking forward to the end of this.
PECS - Picture Exchange Communication System has also been introduced, in the hope of giving Michael an alternative means of communicating. - see info in Links section.
This involves a picture card of the item Michael wants, he gives me the card & I exchange it for the item. So he can ask for things that he wants rather than getting it himself.
One of Michael's favourite video's at the moment is Dave Benson Phillips, Makaton Nursery Rhymes, he loves the music and singing and can quite often be found dancing and singing along, he also joins in with the actions - maybe signing might be an option!
Back to top
