Development

Edith has reached nine months and every day we tick off another milestone. We watch her like a hawk, looking for signs that she is developing "normally" or crucially, signs that refute autistic development. We often video or photograph moments which we think are key. So tonight she sat on the bed, giggling at Bea's Tiny Tears doll and I said "kiss baby". She grinned, leant forward, have TT a big slobbery kiss and, critically, turned to her daddy and smiled. That one subtle, natural, usually unnoticed step in development, a missing part of the autistic jigsaw, is so clearly in place. Joint attention. I've never met a baby who shares their experiences so readily. We know James developed this skill, though I'm not sure it was quite this early and certainly never at this intensity, and we have video footage of him reference pointing, cheerfully checking we had seen what he had. Joint attention is so critical in "normal" development yet it is rarely asked about at this young an age. The CHAT test, which has been validated above 18 months, screens for children at risk of developing autism and joint attention, or rather lack of it, is a major red flag. But at 9 months it's not mentioned in the various developmental checks. Simon Baron-Cohen believes you can tell in the first tear of life whether a child is autistic and I was once sceptical. Now I wonder....

All change

It's been a year of change, with the arrival of Edith, Bea starting school and finally employing a permanent after school carer for James. And as the long summer holiday draws to a close we face yet more changes. Change is hard for people on the autistic spectrum. Characteristically, they find it hard to deal with and disruption to their routine throws the whole world into chaos, making it hard for them to predict what's coming next. We've always felt that James isn't actually that affected by changes, he doesn't seem thrown when we get a reavemwnt cater to cover leave or if I serve supper later or earlier than usual. Overall he's quite passive and seems to cope with these sort of changes quite well, at least on the surface. I'm not so sure how well he's going to cope with the changes coming up at school though. He's been in the same classroom for 3 years mow and a couple of his classmates have remained the same throughout too. But this year he's changing classrooms, entering a class with completely different children and has new teachers and teaching assistants.... I hooe he (and they) copes....

Dipping my toe back in...

Hmmm. The water's still warm! Might have to come in more often....

It's been a long time since I last added to these pages and so much has happened. It would take too long to post a full update but the major change for all of us has been the arrival of baby Edith Agatha in January this year. Needless to say, life has been hectic since then but I feel I'm coming out of the fog now and beginning to feel vaguely in control once again.

A major cause for anxiety had been around James' response to another new sibling - the last time we brought a baby home he spiralled into a frightening and profound regression and "declared" his autism. So it was with trepidation that I crossed the threshold for the first time with Edith in my arms. I am very relieved to say he has taken her in his stride. Well, he covers his ears and gets distressed when she screams but quite frankly I often feel the same way! In many ways nothing has changed for him. We still provide him with one to one care and life revolves around him and his needs. It has been Bea who has made all the sacrifices and bourne the brunt of any hardship. Overnight she went from only child to middle child with none of the positives and all of the negatives. Luckily, if there's one thing that James has taught her it is resilience and she has coped very well with all the changes (although she breaks my heart when she turns to me and says "Daddy looks after James, you look after Edith, but who looks after me?....)

Escape..........

After a lot of deliberating, I decided to stick with my arrangement to come up to Edinburgh and visit my parents with Bea. My husband had arranged to take time off work to cover for James and I had organised resptite for the weekend so things seemed stable at home. My emotional state is still all over the place, as to be expected, but the thought of escaping and being able to not have to think about cooking, cleaning, sorting out school bags, collecting children from various activities was rather tempting. There is also the fact that I am guaranteed more sleep than at home as we get up very early to get James ready for school.

My anxiety levels were quite high for the trip up, in part because Bea had been unwell the day before and I wasn't even sure that we'd make it. In the end she was a dream on the train, apart from the incident when she threw up everywhere..... I nearly held myself together, and quick change of clothes seemed to sort it all out. I don't know why my children don't travel well - I have a LOT of stories about journeys that have been affected by ill children, but will save those for another time.

So I have escaped from a lot of the daily stress. What I can't escape from is my internal stress. I have always been a ruminator, and it has escalated back to levels that remind me of the time not long after James began to regress. That has made my grief harder to control, as I feel like I'm reliving all the grief I went through when I "lost" James. Because that's what James' autism feels like to me, a loss. I see the face of the boy I gave birth to, and love with all my heart, but I find myself wondering where the interactive, lively, loving, giving, entertaining little boy of two went? He just disappeared into a frightening, overwhelming world of autism. And I grieved then and I am grieving again now, this time for two children. And our future. And all my plans and hopes. I will find the strength to get through this and find another path, but right now I wish I could escape from my runaway brain.

What a difference a week makes...

This time last week I was parking my car.
This time last week I was happy and excited.
This time last week I was waiting to see my baby for the first time.
This time last week I told my daughter we were going to see her new baby brother or sister.
This time last week my future was bright, full of hope and promises.
This time last week I felt lucky.
This time last week I had never felt this sort of pain.
This time last week I didn't know....

This time this week I feel more alone than I ever have.
This time this week I can't imagine tomorrow, let alone my future.
This time this week I wish the outcome had been different.
This time this week I am broken, in agony and scared I'll never lift myself out of this gaping hole.
This time this week I feel so guilty for watching Bea watching me go through this.
This time this week I am holding my ill daughter, mourning for my dead baby and it just doesn't seem fair.
This time this week I am counting down the minutes to the moment when I saw the scan and knew what I was facing.
This time this week I feel the loss more acutely than this time last week.

It's over....

Today was the longest day of my life, and I can only hope that I never go through this again. I'm exhausted, emotionally and physically and feel as though all my stuffing has been knocked out. Perhaps the most difficult part was the number of small but significant difficult moments that came up through the day.

This post may contain some slightly difficult issues, so if you are feeling sensitive I'd suggest you read it when you're feeling stronger. I certainly don't want to upset anyone.

I arrived at the hospital at 830 this morning, starved from midnight as advised. I knew that it was very unlikely that I would be in theatre before 1230 as they had warned me that I would be on the emergency list. Being a Monday, I knew there would have been lots of other emergencies over the weekend, so I was sort of prepare for a wait, but I was needed at home for the evening, so I could help with James. We're having some difficult evenings at the moment (last night was a classic - having been sat on the toilet on and off for 5 minutes, he did a massive poo in the bath so we needed one of us to shower the children, the other to deal with the rather unpleasant bath....), so I couldn't leave David home alone with both children. Plus, I wouldn't have been able to get home from the hospital without him.

I had explained this last week, and begged them to make sure I was on the list as early in the day as possible. Sadly, this didn't happen. The night SHO had failed to put me on the list early enough and when the day team came and told me I was ver upset. I begged them to get me on the list earlier, explaining that I would have to self discharge if it got to 6pm. I find it really upsetting that I have lost my baby, have chosen to attend for an operation, yet cannot be added to an elective gynae operating list. If I was having a termination, it would have been a completely different story, with me being far more in control and more likely to get a slot that suited me. It's really not fair and I will be bringing this up when I write a carefully worded letter to PALS.

When the SHO was doing the consent form, I asked whether the products could be sent for genetic analysis. Explaining that we already had a severely disabled child, and that knowing that there was (or wasn't) a genetic explanation would help us gain some closure. Apparently it isn't protocol until you've had three miscarriages, due to NHS funding issues. I know James' problems don't have a specific genetic explanation (although there is strong evidence that there is a genetic component in autism), but if we knew that there was a chromosomal problem with this baby that might have a recurrence risk then we can start making decisions about whether we would continue trying to extend our family or not. The thought that I may never hold another baby in my arms fills me with sadness and sorrow, but I know we would never be able to handle another severely disabled child with James' needs. I couldn't provide the sort of home I would want to provide for any of my children if we brought another disabled child into the world. Of course, I am aware that there may be no answers from these tests. I am also very aware that tests will not rule out autism, and that we could proceed with a pregnancy and be facing rearing another autistic child. None of this is easy to deal with, and I guess I'm quite raw at the moment and will be guided by how I feel a few weeks down the line. We discussed many of these issues before trying for a baby, and whilst in the first weeks of this pregnancy, so I know we'll make the right decision for us.

Eventually, the registrar agreed to write the form, but asked me to take it to the genetics department myself and talk to someone there to try and persuade them to do the test "off protocol". I was aghast, and it was the hardest conversation I had all day but I must have found a symmpathetic laboratory assistant as she took my request form to the powers that be and they agreed without a fuss. But there was more to come - when it looked as though I would not be going down to theatre until very close to the cut off time to get the sample to the lab, they suggested I took the sample up there myself! Or alternatively get my husband to do it.... I'm sorry, but I found that totally inappropriate, I would have just about come round from the anaesthetic and was expected to toddle down the corridor to the genetics centre holding a jar that contained my dead baby. I lost it at that point and told them that the porters would just have to do the job they were paid to do.

Finall, at 230, they let me know that I was going down to theatre. I started getting dressed and then removed my jewellery etc. I asked where I could store them and was told just to leave them by the bed. I was shocked, especially when I was told that they had never had anything go missing. There was no way I was going to take that risk - I have had £4000 worth of jewellery go missing from hospital grounds so once bitten, twice shy. I demanded somewhere locked for my valuables and was told there was nowhere. I lost it, screaming and shouting at the poor healthcare assistant, refusing to go to theatre until somewhere was located. Eventually everything was easily sorted, but not until I had had to get beside myself with frustration. Yet another thing I'll be mentioning to PALS...

On my way to theatre, I became more and more emotionally distressed, experiencing the most profound, deepest, most intest, all consuming, visceral pain I have ever experienced. The theatre staff were so kind, compassionate, understanding and allowed me to wail, my cries were almost not human. The anaesthetic was administered quickly and easily and I woke in recovery feeling warm, safe and knowing it was over. I'm still in pain, both physically and emotionally, but knowing my baby is no longer inside me is somehow a relief. It's going to take a long time to heal from this profound experience, but it can only make me stronger.

Empty

I know all about the grief cycle - we studied it thoroughly enough during our psychology and psychiatry training at medical school and I have supported various families through their losses, both in the neontatal period and with older children. So here I am, in the midst of my own experience and all I feel is empty. Perhaps because at the moment I don't feel there's any closure, I almost feel distant from the whole experience. If I hadn't been for my scan on Wednesday I would still be pregnant (in my head, at least). I would be planning my future with my new baby, and thinking about all the logistics of adding to our family. Instead I'm in limbo, neither pregnant nor actually NOT pregnant. I'm hoping that my operation tomorrow will mean I can start facing my future again. Planning a very different future, but still a future.

I'm staying strong at the moment for the family. James has no idea what is going on and is going through a rather challenging time at the moment. His current favoured activity in the car is to undo his seatbelt and wind down the window, throwing himself out, Dukes of Hazzard style. I'm hoping a friend is going to be able to lend me her spare five point harness car seat suitable up to age 8, as it's getting quite dangerous now.... He's very hyper at the moment too, and perhaps that's because I don't really feel up to spending time with him. I feel so guilty about that and David is managing the brunt of his difficult behaviour but I need to look after myself at the moment.

The weekend has actually been easier than I expected. I had a stall at Duck Pond Market selling my crafty bits and bobs. I've been going there since April, and this was my most successful weekend. The scarves went down very well and my hand dyed yarn is proving very popular. I'm guessing I'll be back to dyeing over the Christmas break, to restock. I had avoided dyeing whilst pregnant as there is a risk of respiratory difficulties with inhaling the dye powders. So now I can do as I please! The other crafters at the market are amazing people - I have shared my difficult news with them and they've all been so supportive this weekend. I wouldn't have got through the weekend without them. I also indulged in some therapeutic spending, which was lovely.

Think of me tomorrow, my friends. I will be waiting and knitting a therapeutic project to keep my mind occupied. I'm sure there will be a lot of tears and heartache, but it will be the beginning of a new phase, the start of a clean slate, and some sort of closure.

Falling apart

I'm sorry to come and share such terrible news, but feel it will be cathartic to get it out.

In my last post I mentioned that things her had gone from mad chaos to madder chaos! Part of that was driven by the lovely news in October that we were expecting our third, and much wanted, baby. Ironically, I had just increased my working hours to two days a week, with the intention of taking on a third day in the New Year. Life was about to get complicated again. We talked and worried about the future - what if James regressed again when the new baby arrived, how would I cope with three children, what would the summer holidays be like, juggling a new baby and James (as well as Bea), how would Bea cope - she's already playing second fiddle to James and a new baby would possibly sideline her even more. And we made plans for the future, where the baby would sleep, what new car we would buy, sorting out all the clothes that I've hoarded in the loft, planning names, excitement at the prospect of a summer not working and looking after my lovely children. The future looked bright and exciting, as well as challenging.

Three days ago our world fell apart. I was 12 to 13 weeks pregnant (my dates are a little uncertain and whilst I had pushed for an earlier scan it never happened) and went to my nuchal fold scan. We had agreed that if the nuchal fold was suggestive of any abnormalities I would go forward for further testing. We never anticipated what happened when I entered the room. I took Bea along, and will probably regret that for the rest of my life. I wish I hadn't allowed her to experience what was the most painful morning of my entire life.

There were two sonographers in the room, the trainee and her supervisor. The trainee started the scan and David and I were beaming with excitement. We were about to meet our new baby. At first all she could find was my (very full!) bladder, then there was a gestational sac. There was something inside it, but I wasn't convinced it was quite what we should be seeing at this stage. The supervising sonographer took over and as soon as she put the probe back on my abdomen I knew what we were facing. She asked me if I had experienced any pain or bleeding and I felt like saying "not until you asked me, and now I am breaking in two". She asked me to empty my bladder so I could have an internal, and I went to the loo all composed and serene as if it was happening to someone else. I'm still not sure if David understood at this point or not. The internal showed the sac and a collection of cells but no heartbeat. I told her I could see there wasn't a heartbeat and I knew what had happened. I needed to know when my baby had stopped growing and she said around 9 or 10 weeks. I got dressed and was taken to a side room, where I shed a few tears and then composed myself for Bea's sake.

The next hour was the most horrific of my life. We went up to the Gynaecology ward, and waited, and waited, and waited. There were no tissues, there were posters about Chlamydia screening, there were other women in there laughing and cuddling their partners (I now know most of them were waiting for early scans because of bleeding or pain) and I just wanted to die. I felt as though my life had come to an end, that it would never be the same again. I just wanted to close the book, and reopen it at a new and happier ending. I wanted them to be wrong and to still have my baby inside me. I finally saw a nurse and she suggested I should just let things happen naturally. Or I could take some drugs that would induce a miscarriage. But I want the possiblity of some answers, and have pushed to have an operation as that way histology can be performed. If I can find out that there was some sort of reason for this to happen I will feel more at ease. Perhaps it was a genetic defect or an infection that meant the baby couldn't survive. Then I can stop torturing myself with all the questions I'm currently asking myself.

Think of me on Monday, when I will be spending most of the day at the hospital. I don't know how it will go but I will come back and share with you as soon as I feel able.

So, what have I been up to?

8 months is a long time, so perhaps you feel you'd like to know a bit more about what I've been up to. It's a long story, so I hope you've got a cup of tea and are sitting somewhere comfy!

The bottom line is that life has gone from mad chaos to, well, madder chaos! The only thing that could make our lives more hectic would be if we got a dog - luckily neither myself or my husband are dog lovers!

James managed to get through most of the last term of school uneventfully. All the winter bugs and viruses had worked their way through his system so he managed to get through a whole term without missing a day. This was a major acheivement - the first two terms, he was missing at least one day alternate weeks! I was called into school on numerous occasions which started to get embarrassing! If a qualified doctor can't decide whether he child is well enough for school, what does she do with patients?!

In May we had booked a week at The Thomas Centre - the descriptions and ethos made it sound like an ideal venue for a holiday for families like ours. It is impossible to explain how much organisation is required when going away with a child like James. He needs his routines and can't be allowed to roam freely around the house/grounds unlike other children his age. He gets bored and distracted easily so needs to have activities available to him but if he doesn't enjoy them we need to be able to leave quickly and diffuse the situation. So a holiday "village" set up specifically for families with autistic children sounds ideal doesn't it? We phoned ahead and made sure there would be stair gates (to keep him out of the kitchen) and with plenty of preparation felt we were leaving with all we'd need. But things didn't go according to plan. The first hurdle was that a week before we were due to go, I fell down the stairs at the train station and fractured my coccyx. Ouch. There is no treatment, other than rest and painkillers, so I was in agony and could barely bend for the week before we left. I wasn't relishing the idea of a five hour drive with a sore lower back, and my expectations weren't dashed! Not only was I in agony, but James found the journey very difficult and spent the majority of the time throwing things out of the car window (thankfully, not himself or his clothes!). We are now considering buying a new car with electric windows at the back!

The complex itself was lovely - there was a small childrens play area in front of the cottage, a large trampoline in the grounds, a heated swimming pool which you booked out for the family so had total privacy, a games shed with ten pin bowling and a pool table, and a play room with a piano and children's toys. Perhaps my biggest disappointment was the fact that whilst luxurious and comfortable the actual cottage wasn't geared up to a very active autistic child. We spent the first few hours "de-Jamesing" the place, putting things out of reach, moving lamps and breakables into other rooms and generally worrying about how much damage he'd do. I was surprised that this hadn't been considered when designing the place, to be honest.

The week had a lot of ups and downs. Actually, an awful lot of downs for me, but that was as much to do with my levels of pain as anything else. There were surprises - for instance James HATED his trip to the Aquarium in Hull and was indifferent to the animals at Rushmoor Park but loved the outdoor play there. He surprised us several times by sitting down (outside) and eating his lunch without moving. A huge achievement for him, and us. By far the most successful day was our trip to Pleasure Island. James has always been a thrill seeker (as a four month old baby, a good way of calming him down was to turn him upside down - I guess he had a lot of proprioceptive and sensory needs even then). He spent the whole day grinning and cuddling us and Bea loved it too. Whenever we go away we always make sure there is a similar facility around for us to access.

Luckily our journey home was a lot less stressful and my pain had subsided a bit by then. We haven't decided whether we would go back and perhaps will wait until James is a bit calmer to try again. What has become clear is that we are unlikely to take any more holidays for quite some time, as it was more exhausting and stressful than staying at home. One option would be to take a carer with us, and we will definitely be considering that for any future family breaks.

So that's part of my update, and I'll add more soon!