http://www.specialfamilies.org/a_fathers_story_feed.xml.html en Special Families 2007 120 http://www.specialfamilies.org/out-and-about-in-a-kaye-frame.html
Paula and I were determined to make the most of our son's new found mobility, so everywhere we went we took him in his Kaye frame as much as possible. Apart from the fact that he regularly fell out of it, a problem solved by using a baby walking harness until he grew to big for it, the problems we faced were nothing to do with mobility problems. They were the idiots who would stop and stare, or whisper to each other as he passed. You'd often hear the words "zimmer" or "that looks fun", but as soon as you caught their eye the perpetrator would look the other way. I can only be thankful that this all occurred at a time in our son's life when he was too young to notice. Occasionally a more direct approach resulted in a question about the frame which were only too happy to answer, in the interests of education, but we were always aware that people noticed his frame rather than his handsome good looks or cheeky personality. The exception to this was on holiday in Crete, where we found the local people were exceptionally friendly and seemed to not notice his frame or other special needs. It was a wonderful antidote to the difficulties of life elsewhere. ]]> Mon, 23 Jul 2007 19:08:43 +0000 http://www.specialfamilies.org/out-and-about-in-a-kaye-frame.html John Attitudes to Disability Mobility Special Needs http://www.specialfamilies.org/physio-and-nursery-placements.html
We also had significant issues with his nursery placement at this time. We'd tried to send him to a mainstream nursery for a couple of mornings a week like all his friends, but had awful problems with the attitude to special needs at the nursery and had to withdraw him. Fortunately our second attempt at selecting a nursery for him had a much happier result. He had a one to one assistant at the nursery who we had to pay for during holiday times. It was expensive but worth it, I think.

Although we both tried to keep positive, especially around the kids, when I look back I know that both Paula and I were depressed at this time. We hadn't yet had time to come to terms with the new direction our life was taking and all the implications it had for our son's future. We were so lucky that this didn't push us apart as is the case for so many couples with special needs children. ]]> Tue, 19 Jun 2007 19:57:45 +0000 http://www.specialfamilies.org/physio-and-nursery-placements.html John Mobility Special Needs http://www.specialfamilies.org/a-new-way-of-life.html
One thing that started to become more obvious was that integrating with "mainstream" children was becoming more difficult. Our friends' children were all now running around and needed little supervision or input. Trips to see some friends became more and more difficult for Paula, since she spent all her time looking after our son and the other children by association, so she rarely found time to chat. That's not to say that some of our friends with mainstream children have not been an absolute rock for us, its just that we've become much more selective with our friends.

As well as settling into a routine of regular appointments at the Child Development Centre, there were a number of visits to hospital clinics in the hope that we might find out something about the diagnosis. We had a vague hope that if we discovered the cause, there might be a miracle cure available. Perhaps something as simple as a dietary change would be all that's required. We also started to avidly research all the related topics on the web, looking for a link between the various symptoms we knew about. Sometimes we'd find something that sounded exactly the same, then we'd panic about the prognosis that came with this discovery, only to find out that it couldn't possibly be the cause. I remember at one point being struck by how closely our son's symptoms matched those of Angelman's Syndrome, but we now know this is not the cause. I guess the internet is a powerful tool but also a dangerous one as it can be very misleading.

The subsequent visits to the genetecists and neurologists at hospital at least discounted a large number of disorders - I had no idea there were so many described genetic disabilities! Blood samples were taken which also discounted chromosomal anomalies, Fragile X and a few other possibilities. In parallel with this we were busy working with physio, play and speech therapists to help our son's delayed development. Trying to teach a heavy 2 year old to "4 point crawl" (as opposed to commando crawl) by supporting them with a towel under their tummy is a good way to ruin your back! Life was so hectic, I was using nearly all my annual leave to attend as many appointments as I could. But I couldn't face not being part of all this, not being with my child at the blood tests or with my wife at the many difficult meetings. ]]> Sat, 10 Feb 2007 19:53:03 +0000 http://www.specialfamilies.org/a-new-way-of-life.html John Genetics Hospital Appointments Therapies http://www.specialfamilies.org/initial_experiences_in_the_health_system.html
There were about 5 therapists at the review which was just the beginning - we've lost track of all the health professionals we have had dealings with now! One thing they noted which we hadn't was his tremor - when you see someone day in and day out you just assume that's the way they are, but when it was pointed out to us it was obvious he had a shake.

From then on we had regular appointments with physio, occupational and play therapists at CDC. They were all very kind and helped us through these difficult times as parents as well as helping our son to learn new skills. We quickly learned simple tricks like ways of picking him up which would encourage him to do most of the work himself, as he was unable to get himself into a sitting position.

The paediatrician at the centre started a series of tests for some of the more likely disabilities, all of which returned negative. Unfortunately these involved blood samples, something which he is now quite fearful of. In addition an MRI scan was arranged for his brain. This uses an amazing scanner to take a series of detailed pictures of slices through the brain - we saw them later and they looked rather like black and white negatives, but extremely detailed. The results of this was that he had an excessive amount of fluid around his brain, and slightly enlarged ventricules (the spaces in the centre of the brain). This was described as benign arrested hydropcephalus. At first we assumed he had previously had a blockage in the system which drains fluid from the brain (a common cause of hydropcephalus) but the blockage had cleared, leaving him with some brain damage that caused his tremor and delays. So we joined up with some hydrocephalus related support groups but quickly found that he was not suffering from typical hydrocephalus and did not have a lot in common with other people with hydrocephalus. In fact we have now found out that the extra fluid is probably the result of a genetic tendency for a larger head, but he has a normal size brain so the space is occupied by fluid.
So, no nearer to a true diagnosis but at least we are making progress with the help our son is getting in the therapy sessions. ]]> Thu, 16 Nov 2006 21:03:14 +0000 http://www.specialfamilies.org/initial_experiences_in_the_health_system.html John Hydrocephalus Therapies http://www.specialfamilies.org/200609fs.html
At nine months he had his check up with the health visitors and they recorded that there were no concerns, although they did note that he could not pick up small objects using a pincer grasp. They failed to follow this up, and we also later noted that they had reported he could pull up to sitting. In fact he didn't achieve this till 20 months.

The expected milestone dates came and went with little progress. First rolling, then crawling and walking failed to materialise. We raised our concerns with the health visitors but were told that lots of children don't walk till 18 months or so and there was no need to worry. I have to say at the time my attitude was that they were the professionals, I had no experience of all of this so they must be right. Our son was a very laid back child and I just thought that he wasn't meeting milestones simply because he couldn't be bothered. Now I know what I know quite frankly I'm disgusted that things weren't picked up earlier. There were even signs like a head circumference that was off the top of the usual chart which went undetected. Its all very well saying that one aspect of development might be late in a child, but when all aspects of development are so late the alarm bells must surely be ringing?

At 12 months we went to see our GP as we wanted a second opinion. He also felt there was nothing wrong, but asked to see us again in 2 months. At 14 then 16 months we saw the GP again, when finally he said he would like to get a second opinion from the community paediatrician. This finally occurred when he was 18 months old. We duly turned up for the appointment and went through the complete history of his life (the first of many times!). During the appointment our son whistled which stunned the paediatrician - this was bizarelly a skill that he picked up at around 6 months old! But most of the checks and tests during the appointment were failed, and the consultant said he did believe there was something wrong. He wasn't sure what but it could be cerebral palsy or a similar disability.

After months of denial this bombshell was probably the most difficult thing I've ever been told in my life. I couldn't drive home as I was so upset, so Paula bravely drove home and let out her feelings when we got back. All we could do is break the news to our relatives and wait for the upcoming panel review at the Child Development Centre we were being referred to. I hate admitting how much this time upset me because I don't want my son to think I blame him or that I'm in any way disappointed in him or his achievements. In fact I'm so proud of him and how he's coped with difficulties that I can only imagine, but the fact is that receiving this type of news forces you to adjust your expectations of future family life in a major way. I still can't really believe that this has happened to my son, even today. ]]> Tue, 10 Oct 2006 19:38:54 +0000 http://www.specialfamilies.org/200609fs.html John Milestones http://www.specialfamilies.org/200604afs.html
As he started to feed better, he gradually put on weight and this coincided with him starting to vomit (reflux) frequently. That's what all babies do, we told ourselves. It made getting out and about nigh on impossible as we'd just get to the door then oops, another sick, another change of clothes. The washing machine was on permanently (it packed up completely a little while later). But he was gradually putting on weight, although a bit behind his peers now, so the health visitors told us not to worry. Another thing I didn't take any notice of at the time was the fact that he would always cry when placed on his back for a nappy change.

At about 3 months the health visitors recommended we try to wean him because the solid food would help reduce the reflux. At this point he was being sick about 40 times a day, not just after feeds either. The health visitors kept telling us this was normal, not to worry about it. The solid food didn't help at all so he was moved onto Gaviscon to help settle things down. From what we know now this was a really bad thing to do as one of the main ingredients of Gaviscon is a sodium salt which excacerbates his kidney condition. Again, this had no effect.

A side effect of the reflux was that it took a lot longer for night times to settle down than for most. Because he wasn't able to keep down a decent amount of milk, sleeping through the night was out of the question. The typical routine was 40 minutes feeding, 40 minutes winding (with a clothes change for him and us!) and 40 minutes sleep, then start all over again. He continued to put weight on so we were again told not to worry, this was normal. During a post-natal group meeting when our son was sick everywhere the health visitor commented "I see what you mean, he is sick a lot isn't he". I guess until then our words had been falling on deaf ears.

We researched reflux on the internet and failed to find any conclusive remedy for it. At 6 months old, we booked a private appointment with a cranial osteopath as the traditional health service was obviously not able to help. I really don't know whether this was the cure or not, but within a month the number of vomits per day dropped from around 40 to just a few. During the session the therapist massaged his lower spine and head and at one point we heard a definite click. The therapist said that his spine aligment had been fixed; it was slightly misaligned as a result of the long second stage of birth. Whether this did cure the reflux or not, the fact is this was the end of the six months we spent permanently washing clothes and scrubbing the floor. Things were on the up! ]]> Tue, 10 Oct 2006 19:31:34 +0000 http://www.specialfamilies.org/200604afs.html John Reflux http://www.specialfamilies.org/200604fs.html
Through all the antenatal classes you are prepared for the intense experience of the first few weeks - the late nights, lack of sleep, the constant attention required. Having your child in NICU makes you feel like a fake parent - sometimes you turn up for a feed only to find the nurse has already done it. Other times it felt like we were watching our child on TV as we had so little contact with him compared with other parents. And we weren't even being woken at night! Its also an experience which has deeply engrained itself in my memory and one which I frequently think about even now.

My wife had a bed in the transitional care ward, whilst I had to return home each evening only to return as soon as I woke up the next day. We both spent as long as we could in the NICU unit with our son. We learnt to change nappies through the holes in the incubator. Fortunately our son gradually picked up and we were soon able to give him the occasional cuddle. However, his bilirubin (jaundice) levels deteriorated and he was put onto a billy blanket inside the incubator. He couldn't feed properly so we fed him through the naso-gastric tube.

I returned home each evening when the nurses finally got fed up of me and turfed me out at about 10pm. Then I spent about another hour phoning the grandparents to keep them updated with the days news. Generally I sat down with my tea (junk food!) at about 11 each day!

We never found out what the nature of the infection was, or even if there really was one. After 5 days in NICU our son was transferred back to the transitional care ward. We weren't allowed home until he managed to feed himself which was at 10 days. ]]> Tue, 10 Oct 2006 19:29:12 +0000 http://www.specialfamilies.org/200604fs.html John NICU prematurity http://www.specialfamilies.org/200103afs.html
The pregnancy itself went quickly and at the time seemed to be normal. Looking back on it Paula and I were aware that our child wasn't a very active 'kicker', but I thought that the baby was just laid back. I had no idea that this might be a problem. With a month to go the bags for hospital weren't packed yet although we'd sorted out most of the stuff. So we were a little surprised to find ourselves up at 4:30 in the morning packing the bag as Paula was starting to go into spontaneous labour one month early. On the advice of the  hospital we took our time and had breakfast first, then drove to the hospital expecting to be told to go back home as it was a false alarm. I remember the song 'Manchild' being on the car radio on the way in which was bizarre!

Friends and family who had been through the birth process before us had told us that this would be the most amazing and joyous event. In my experience, once things started not going to plan it all got a bit nerve-wracking even though the birth was relatively smooth. The first thing is your carefully prepared birth plan, drawn up after long evenings of  National Childbirth Trust sessions, gets thrown out of the window. Water births and so forth were out of the question and Paula was closely monitored, although the midwives  were happy to let her have our baby naturally with only gas and air. The second stage seemed to go on for ever and ever but otherwise things went well, and our beautiful baby  boy was born late afternoon. His Apgar scores were good and he was immediately crying, though Paula was whisked away immediately after the birth as there were some  minor complications. I was left alone for a while with our crying baby and some very confused feelings, wanting to be with my wife. Now, we often hear how important the first cuddle and couple of hours are in the bonding process for a mother and child. Like many other things in a special needs family, she missed out on this though was back with our baby and myself later in the evening.

At first we weren't aware of any problems, though the first night found our baby wrapped thick in blankets, in an incubator against a blazing radiator in a hot room. I was too tired  to think about it at the time but I guess now that he must have been having some temperature control problems. My wife was given a bed in the transitional care ward as our baby was pre-term (although only slightly). He struggled to feed at first and we were told that this was because babies born before 37 weeks tend to have no sucking reflex. So  we learnt to give him his first feeds through a naso-gastric tube using a syringe.

The day after the birth I met my parents in the hospital reception then returned to the ward, only to find Paula and the baby had gone. The bed was empty and the  incubator was gone! A nurse quickly arrived to explain that they thought our baby had an infection so was being moved to the Neonatal Intensive Care Unit (NICU). Looking back I probably ought to have burst into tears at this point but you sometimes find yourselves on such a treadmill you have no time for emotions, so I just went round to the unit to find my family... ]]> Mon, 09 Oct 2006 21:34:56 +0000 http://www.specialfamilies.org/200103afs.html John Birth NICU Pregnancy http://www.specialfamilies.org/200103fs.html Special Families Diary part of this website. This is the story of our family from my memories of the last 5 years. I plan to write the story a bit at a time and it's probably take me a while to write the whole thing so keep checking back for updates.

Hope you find it all worth reading. ]]> Mon, 09 Oct 2006 21:28:18 +0000 http://www.specialfamilies.org/200103fs.html John None