Finally Getting Somewhere

It’s been a while since I last updated anything here, so I thought now I have something to update with I’d take the opportunity to write it down.

As you know, we’ve been waiting since February 2017 for an assessment for ADHD for Picklepot. We finally got a preliminary appointment with the ADHD nurse in September 2018, and after spending forty-five minutes in a small contained space with myself and Picklepot, she looked at me and said, “Is he like this all the time?” So I said yes. She asked how I coped with it. I said I wasn’t aware I had a choice – he’s my son, and since I can’t poke him back where he came from I had to cope with it 😉 It’s just something you do, as a parent, is cope with your child, because when nobody else is willing to help you (professionals I mean) what other option is there.

Anyway, at the end of a two hour meeting with her, she said that there was no doubt in her mind that Picklepot did indeed have ADHD, which is a very common co-morbid issue to have alongside the ASD diagnosis. A week or so later, I received the report from her, in which she’d detailed a lot of information about what she’d seen and she’d picked up on a lot of subtle things which I wasn’t sure she would notice during that meeting, so I’m very grateful that she’s obviously on the ball and she knows her stuff. In the report, she recommended that Picklepot had a formal assessment with the Dr who can then put the official tick in the diagnosis box and once we have that we can then move forward with how to help Picklepot deal with everything, and strategies to help us deal with it too.

The weird thing about that was that the letter for our appointment with Dr A had arrived the day before, and was set for 22^nd October, so I already knew we were getting that appointment, and I was surprised (in a good way) how soon after our original appointment it had been set up. We went along on Monday to meet with Dr A and once again we were in quite a small room – Dr A didn’t have a box of things to fiddle with as the nurse had done, and Picklepot quickly became very restless. He was moving around the room constantly, touching sockets and light switches, standing on chairs to look out of the high windows, he stood on the measuring thing to see how tall he was, stood on the scales to see how much he weighed, wanted to play with the blood pressure machine but I saw his eyes lock onto it and managed to distract him away from that before he touched it! When it was time for the doctor to talk to Picklepot directly he first wanted to sit on the bean bag on the floor, then changed his mind and wanted to lie on it, then he put it on top of a chair to sit on the bean bag on the chair, eventually he settled for sitting in the chair with his feet on the bean bag but he continued to fidgit and move the whole time. He found it difficult to understand the doctor, who has an accent he isn’t used to, and he was looking at me a lot for confirmation of what the doctor had asked, or for clarification of what was being asked.

The letter had advised to allow an hour for the meeting, in reality it was again closer to two hours. When we left Picklepot was bouncing off the ceiling and chattering away at a million miles an hour, as usual.

The doctor has confirmed ADHD diagnosis (he said it’s very obvious and he hopes that if we work together we can work out a way of treatment that will greatly benefit our whole family). He said that for school it might be best to consider medication to help him concentrate on what he needs to concentrate on, but he did warn that due to the ASD it may not mean that Picklepot is able to conform entirely to the mould that the government expect from children his age. He said if we do medicate it will help the concentration, but it won’t give Picklepot the reason “why” he is expected to do something at school, why he needs to write things down (if he knows it, and I know he knows it, and the teacher knows he knows it, he sees no point in ‘proving’ it to anyone else) This is, the doctor confirmed, a classic ASD trait and will not be something that can be resolved with ADHD medication, so he warned me that we would still need to deal as best we can with that side of things – but that is what I expected anyway, so no shock there.

The doctor feels that Picklepot’s sleep issues are potentially related to his body not being tired enough for sleep – though he is continually on the move, he doesn’t do any structured sport (with the exception of PE lessons at school) so he has recommended that we look into something along the lines of football, tennis, swimming, dance etc, something with a routine class in place where he does specific tasks and learns new things each time, and at the end of a set period EG a term he can see how much progress he has made. The doctor feels this will help make him more physically tired, and ready to sleep. On this basis I am looking into swimming lessons as this is something he is particularly interested in.

The doctor will send me an information pack about ADHD, included in it will be a number of things we can think about trying to help Picklepot going forward. One of these things would be medication, which the doctor does recommend in Picklepot’s case, but he was very clear that ultimately the decision needs to be discussed and agreed between myself and Daddy P. At our next appointment we will discuss how we would like to proceed, and start down that path.

I came away from the clinic feeling relieved that we finally have a formal diagnosis, relieved that we now have a plan of action to move forward, but also somewhat disappointed that it has taken me so long, so much battling and fighting for the services needed, to get this far. I understand that it is not the fault of the wonderful staff who have dealt with us, but the fault of a damaged system which is not providing enough staff to keep this rolling at the speed it should be. If I had given up fighting for Picklepot after finding out the paediatrician had discharged him then we would not have got this far, and Picklepot would be continuing to struggle to cope, his school work gradually suffering, his frustrations and his anger issues getting more and more out of control, until what? Until he fails the school system and gets into trouble for fighting, or worse? Until he’s arrested as a young man and enters the court system, unable to control himself and unable to understand why? This system seriously needs more support than it currently has, and as someone who has mental health issues myself I feel it is falling seriously short of supporting our young children and their mental health. If a child of 8 is ignored when he has such issues, how is he expected to be able to deal when he is 13, or 16, or 18, or 21?

So here we are now, we have a diagnosis of ASD and ADHD for our 8 year old whirlwind of energy, and I am hoping that moving forward we can now get the correct support in place for him in school as well as at home (and at Cubs, and the other after school clubs he attends) to be able to help him realise his potential.

I’m a very tired mama, but I will not rest until my child has all the support he needs, and is entitled to.

A Difficult Time

My pregnancy with Baby A was not a straightforward one. From practically the moment I got pregnant until 20 weeks, I had sickness morning, noon and night – the doctor described it as “mild” HG, which I gather it was as I was never hospitalised with it to be rigged up on a drip, but at the time it felt anything but mild. My knees were sore from kneeling on the bathroom floor tiles vomiting into the toilet so often. My eldest, J, became obsessed with mummy being poorly when I was home alone and he ended up crying every morning when I tried to drop him off to school because he was so frightened of something happening to me. I was so exhausted that when I wasn’t being sick, I was asleep. At 18 weeks my doctor prescribed me some medication to try and resolve the sickness – at 20 weeks it finally worked, and I started to feel more human again.

The human feeling didn’t last long. Pretty much as soon as the sickness stopped, the PGP and SPD kicked in. Pretty soon I was walking like I’d been kicked up the backside, and physiotherapy helped but didn’t resolve it. Again, I was considered a mild case as I didn’t need a walking stick or a wheelchair, but again it didn’t feel that way as I hobbled to school and home again twice a day, or held onto the shopping trolley in the supermarket for dear life as it was the only thing keeping me upright for the length of time that shopping took.

Despite the difficulties my body was having, I was utterly in love already with this baby I carried. At our 20 week scan they couldn’t finish all the checks required or confirm whether I was carrying a boy or a girl, so I went back at 22 weeks for another scan where it was confirmed all was well, and I was expecting a son. My heart burst with happiness despite the difficulties I was having, and the love which consumed me already doubled in size as I imagined my two sons growing up.

My joy was tainted when I had to have a chat with one of the duty midwives after that scan. She told me that they were operating on a new system which looked at mothers height and weight to work out the weight the baby *should* be. Using the new system, my first baby was considered small. J had been five days over due date when he was born, weighing in at 6lb 10.5oz. I thought it was small at the time, but hospital staff at the time had said it was within normal parameters, nothing to worry about, so I hadn’t done. Now here was a midwife saying I’d been right all along, they would expect my baby to be bigger than that, particularly as he was over due. She advised that due to his birth weight it might indicate that something wasn’t working properly during my previous pregnancy, so as a result they would be keeping a closer eye on me during this pregnancy.

Every two weeks I returned to the hospital for another growth scan, and they measured and checked amniotic fluid levels as well as the size of baby to ensure he was growing as they would expect for his gestation. At 34 weeks I was told that baby was breech (feet down) and I was booked in for consultation to discuss ECV.

I was petrified. I’d heard awful things about ECV’s, the stress they put on babies, how painful they were for mums – I knew of one woman I’d gone to school with who’d tragically lost her baby at 40 weeks after an ECV – I was beside myself with worry. I discussed my fears freely with the consultant at the hospital; she was so calm and confident in the ability of her colleague to perform the ECV it was hard not to believe her. She advised that if they didn’t do an ECV I’d have to be admitted to hospital for a planned C Section as baby was no longer feet down but bottom down and they couldn’t allow me to have a natural labour with him in that position due to the likelihood of additional complications (I’d had a difficult labour with J and his heart rate had gone from accelerating massively in between contractions to dipping far too low during them; he’d struggled and had a bowel movement, and when he was first delivered he had to be taken away from me to have suction and it seemed like an age before his first cry)

At 35 weeks I arrived at the hospital for my ECV. I was still petrified, struggling to stay calm, hoping with everything I had that baby had moved into the right position and I wouldn’t have to go through with the ECV. I was hooked up to the monitors and left for an hour so they had a good baseline reading. The consultant came and checked me over and confirmed baby was still bottom down and ECV would be necessary. “What if I say no?” I asked quietly. He looked at me directly. “Well, then, I’d have to respect your decision and we wouldn’t go ahead with it. However, I must advise you that since you’re now 35 weeks pregnant you could go into labour at any time, and we couldn’t risk that happening while you’re away from the hospital. That means I’d have to admit you, and you’d have to stay here until baby is born.” My heart stopped. He wasn’t kidding. I couldn’t stay in hospital for that long – Daddy P had to work, it would scare the living daylights out of J who was already freaked out enough about the effects pregnancy was having on me, I still had work to finish up before I started maternity leave, but at the same time, I was so scared for my baby.

The consultant registered that this was a big issue for me. “Look,” He said, “I’ll be honest with you. If this hurts, I’m doing it wrong. It might feel uncomfortable, you might feel a bit sick, but if it hurts, tell me and I stop. It shouldn’t hurt – at all.” He looked at me carefully. I’d been told by friends in another county that at their local hospital they were told an ECV would always hurt like hell, that gas and air would be available and they were encouraged to “put up with it until they couldn’t take any more” I told my consultant this and he looked horrified. “We don’t operate like that here,” He said, “If I’m hurting you, tell me and I stop, no questions.” He then ran through the fact that they would monitor baby for at least an hour after the ECV to ensure he wasn’t distressed, and what the ECV would involve, and all that kind of stuff they have to tell you.

He left Daddy P and I for a moment to think. My mind was spinning in a thousand different directions but this consultant, the way he spoke, his reassurance (the fact that he reminded me a lot of a paramedic I used to work with, known fondly as Big Kev and who was in the classification of “knows his shit”) the fact that without this ECV I would have to stay in hospital until a predicted difficult breech delivery or have an elected c section … The decision suddenly became easy. “Lets get on with it, then” I said.

As predicted by the Big-Kev-Alike consultant, the ECV wasn’t painful – it wasn’t even that uncomfortable. It made me feel a bit swimmy and sick, the same as if baby had a good old aerobic workout, but the consultant was gentle and didn’t rush through the procedure, kept checking on the monitor to confirm baby wasn’t distressed, and he was very pleased once it was done, and done so quickly and simply. His only concern was that baby wouldn’t remain in that position before delivery as it had been so easy to move baby round.

I stayed in that hospital bed, on the monitor, for far longer than an hour afterwards. When I asked a midwife why, she said it was just for additional reassurance as I’d been so scared beforehand, the consultant had asked them to increase their normal timescale to be doubly sure that everything was OK before I was released. I wanted to tell him thank you for that, but I never saw him again.

At 36 weeks pregnant I had another growth scan, umbilical function was checked, amniotic fluid was checked, position and growth of baby was checked. The sonographer was happy. I felt relieved. It seemed like, finally, the pregnancy was going to plan.

Two weeks later, the day before I was 38 weeks, I returned for another growth scan. I was asked to go and wait in the ward. It had happened before, and they’d wanted a urine sample, so I assumed it was the same this time round. Daddy P and I sat together chatting and not worrying. We thought everything was OK. After a while of waiting, midwives milling about but nobody dealing with me, I asked a midwife if they needed a urine sample again as I was desperate for a wee. She said no, I was free to go for a wee, so off I went. As I locked the toilet door it suddenly struck me – if they didn’t need a urine sample, what was I waiting for?

Back on the ward, I found out. Another consultant came to take us into a side room. She looked serious. “Your growth scan this week shows baby hasn’t got any bigger since the last scan 2 weeks ago,” She said. “It would appear your placenta is failing, and baby isn’t getting the nutrients he needs to grow. He’s small for this stage of pregnancy, in the fifth percentile, but as long as he was growing he was better off staying inside. Now he has stopped growing, we’re concerned. We want him to be delivered, as quickly as possible.” She was all for inducing me then and there. My world stopped, imploded, erupted, my mind was screaming no, my hands cupped my bump instinctively trying to protect him – but how could I? My own body was betraying me again, failing my baby, failing to help him thrive. If it hadn’t been for those extra scans I’d have never known – he was as active as ever, as I was religious about counting the kicks and being aware of his movements – but here was this woman telling me he was in serious danger if he wasn’t delivered quickly.

I went home that afternoon to make a shaky voiced phone call to my mum, who changed her plans immediately to come up and collect J the following morning to take him away to stay at the caravan. I packed my hospital bag, made arrangements with my mother in law for her to take me into hospital the following morning to be induced. I was petrified, again, and all night I barely slept because I was panicking about him not making it until the morning.

The next morning, in a daze, I got into the car and we drove to the hospital. I don’t remember if we talked or laughed or if we were silent or what happened. I was shaking, and scared, and willing my baby to be OK.

I was induced just after 11am. I was encouraged to walk around, to keep active, as the theory was that it would be quicker if I did. All day, Daddy P and I went from the maternity ward, around the hospital, out to the field next to the hospital and did circuits around it, and while I had contractions, labour didn’t kick in. Daddy P had to leave the hospital when labour wasn’t established by late evening.

Baby A was born after 20 minutes of active labour, at twenty past three in the morning. It was very quick and he weighed only 5lbs 4oz. After delivery one midwife commented on the “scrappy looking” placenta, which is what caused the issues with his growth – my scrappy looking placenta was the result of placental dysfunction, and I was very lucky that the pregnancy was being monitored so closely and he was delivered when he was.

At the time, all the extra scans, the travelling back and forth to hospital, paying the extortionate car park fees, it seemed like such a pain in the backside. I’m so very glad they happened. I’m so very glad that the hospital were working from that new information which said my first baby was expected to have been heavier than 6lbs 10.5 at 40+5. I’m so glad I went to every appointment, and so glad that after a difficult pregnancy and a tough first couple of days (a whole other story), all has been fine for both of us.

Baby A is now 47 weeks old. Last time he was weighed he was a healthy 22lbs. He loves his food, he is active and happy and healthy and every time I look at him I am so thankful that despite everything, he’s here and he’s OK.

Mummy P 

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