A couldn’t wait to be born and hasn’t stopped tearing her way around this world ever since. She is a gorgeous, bubbly, funny, loving and lively girl with a beautiful soul. It breaks my heart when I see her struggling through the day and I wish I could get into her head to help her out.
She is our youngest and always will be. From the time I fell pregnant with her, my life changed. How she didn’t come out looking like a fish finger combined with a potato waffle I will never know!
Her’s was the second pregnancy where I had pre-eclampsia and needed to be delivered early, the second time I had a baby in special care and the second time I had to battle with medical professionals to let me out of hospital to take my baby home with medication for my unsettled blood pressure. It was a tough time for me because it was so similar to G’s birth that I struggled with post-natal depression. I went from someone who was barely in the house to someone who’s house was bleached from top to bottom, I had bleach burns on my hands and was too scared to leave the house. People I considered as close friends stopped calling, stopped messaging me and drifted away rather than being there to help me through. The health visitor had known me for a few years already and luckily spotted the differences in me immediately. Thanks to her I was taken to see the GP and helped through fairly quickly with a combination of medication and counselling.
I had now moved in with my fiance (I must tell you the story of his proposal one day) and we were living as a family, far closer to the school than I had been as a single parent. The proximity of our home to the school was a huge aide to my recovery in the end as I could literally take it step by step. My son was old enough to walk to school (at the end of our street) by himself so I only had to get my daughter to nursery and collect her. My fiance helped me out a lot at the beginning, even leaving work to do the school runs until I was well enough to return partially to normal. We were incredibly lucky to be able to do that.
A was such a similar baby to J. She wanted to be held all the time. Every time I put her down she would cry. She hated tummy time with a passion I have never seen in a baby before or since. Even putting her in the pushchair was a palava once she grew out of the rear facing pram. I had to adapt to doing everything with her in a sling on my front. I was cooking, cleaning, shopping, walking and gardening with her there until she was simply too heavy for me anymore. Even when it came to her milk she was difficult and strong willed. She would only take a bottle if she was lying on my upper legs facing me, holding the bottle herself with support from me. She would spit the milk back out very often and was weaned by four months of age because she found the milk and bottle so difficult.
My other children were struggling with school, friends and life in general as they were still undiagnosed at this point and autism hadn’t even entered my radar. J had been discharged from the paediatrician so I thought it was all down to my parenting, something the post natal depression didn’t help with one bit. At night A hated to sleep unless she was with me. We had her moses basket next to the bed and she wouldn’t settle in it at all unless she could see me rocking her and stroking her face. She loved her dummy and cuddly toy and was always wrapped up in a baby sleeping bag.
As she got too big for the moses basket and it would tip head down with her weight and wriggling, we bought her a cot. The plan was to put the cot in the corner of our bedroom but she was so wriggly and just couldn’t settle it took an age to get her over there. The times we were in and out of bed wasn’t funny in the slightest as she threw everything around her cot, wriggled so much she escaped the sleeping bag and eventually would pull herself up on the cot. Having had a similar baby before with J I knew it wouldn’t be long before she would be out over the top of the cot. Every morning both her and I would be exhausted from a long night and we would still be asleep when her daddy got up for work. She would be put on my pillow with me to cuddle in and would sleep perfectly (little monkey).
The house was old and damp (a private rental and not the first damp house we had rented) so my children were suffering with bad chests which also kept us up at night. It was a tough time all round.
We were fortunate to be allocated a council house when A was a year old so moved away from the damp and health problems our children had, into a quieter street with a cul-de-sac but nothing else. The children had to move schools and it wasn’t long before A was old enough to start at their nursery.
During this time we had been trying to potty train her, but she had flat out refused. She would urinate on the floor next to the potty, poo on the floor in front of the toilet- it was really hard work and getting us nowhere. We gave up and stopped until she was a little older then one day when she was nearly three she told us she didn’t want to wear nappies any more and has been dry day and night ever since. Amazing.
She was still as clingy as ever but I had been taking her to a mums and babies’ group in the same room as the nursery, so she knew some of the other children and had been in the room before. My other children were struggling even more with the change of house and school so my mind was scattered, but even through all the stress going on I knew her first day in nursery was going to be hard. I had a nagging feeling that I really didn’t want her to go. It was more than I had felt with the other two, I genuinely didn’t feel right about her going.
Well, her first day came for settling in. We managed to get her siblings into school literally kicking and screaming then it was her turn. She was in my arms and I took her into the nursery room. I had been talking to her and explained to her I would be back soon. She hated it. She was crying for me and didn’t want to stay.
Parents are always spoken to like idiots at this point. We are told that it is ok and acceptable to leave our children with strangers, to expect them to be distraught and to scream for us and that leaving them is the best thing to do for them. I wasn’t happy. I think that everything I had been through up until this point had made me stronger and changed my mindset.
I phoned up an hour later to see how she was doing and could hear her in the background. I was told she had settled in but I was less than convinced. When it was the end of the settling in time I was the first one there, waiting eagerly to collect my child. She was so happy to come home it was a huge relief to see her.
By the Monday morning they had changed the procedure for the nursery children. We were no longer allowed to take them into the nursery. Now we had to hand them over to the staff at the door and the staff would walk them down the corridor to the nursery. A screamed blue murder as I let her go and continued all the way down the corridor. She was still upset when I collected her early that day. It just hadn’t felt right.
She never went back to nursery.
More than that- all of my children came out of school and never went back. It is the best decision I have ever made.
As A was developing, she was slower than other children her age, but I always put it down to her prematurity. However, once she got going, she didn’t stop. This was the same with her babbling and her physical movement. She found a half bum shuffle that could get her where she wanted to be and that was that. Off she went. She has not stopped moving ever since.
By the age of four we had started to have concerns for her development. She was very difficult to feed, wouldn’t stay in a pushchair, then wouldn’t walk, had such a strong mind and seemed unable to cope with other children. She was finding everything painful to her ears and constantly lined things up. When she had toys out, she would seemingly place them randomly around the room, yet if you moved anything she would know and let you know it too. If she wasn't doing that then she was lining them up in colour order. Her older brother J had been very similar with cars and marbles and now she was into cars too. The alarm bells were ringing louder and louder for us so I approached our health visitor. She literally spoke to me like a child, disbelieved everything I said and went to speak to our GP without me there. Then A was sent for (another) hearing test.
By the next time I saw the health visitor her manner had changed completely. She had discovered I was as qualified as she although in a different area and spoke to me as an adult. The difference was stark and unacceptable but my concern was A at the time so I took it no further. I repeated my concerns and was dismissed again with the comment that I should ‘tweak’ my parenting!
By this point I had seen how terrible the GP referrals to CAMHS were so found the referral form online myself, completed it myself and submitted it to CAMHS myself. They sent us an initial appointment with a mental health nurse and told us of the long waiting list for assessments (which I already knew). So I booked her a private assessment for autism at the same place J had been booked into. There was no way I was going to live for another ten years with people telling me it was all in my head and all down to my parenting skills, or lack thereof.
I had a pile of paperwork to complete prior to her assessment, all about her behaviours and reactions to different stimuli. It covered her milestones and interactions, communication and understanding. Then at the assessment centre I spent the day talking to a multidisciplinary team whilst she completed some play based assessments with a psychologist next door, then we swapped places and they all spent time with her before returning with their diagnosis. By the age of four she had already become an expert at hiding her difficulties from people she didn’t know well- like she was pretending to be the person they would want to see rather than being herself. This is called masking and can be a huge issue when diagnosing children with autism, particularly girls.
I cried when, after five minutes at the assessment centre, the speech and language therapist told me she had seen a crack in A’s mask already. The relief that someone had already found a way through the mask was beyond words.
We left there that day with a diagnosis of autism with the pathological demand avoidance (PDA) profile. This is what I had suspected from her holding her ears in pain and lining her toys up, but had been dismissed and told to ‘tweak’ my parenting.
This is now three children within our home that have been diagnosed with autism. Three children that have been dismissed by medical professionals and three children whose parents have been blamed for their difficulties. This is not good enough.
We should not have had to go private for our children to be diagnosed with autism. The fiddling of the waiting lists by CAMHS does noone justice and makes a mockery of the whole mental health system.
When you speak to the parents of children with autism it is very rare, if ever, that you will find any who have not been blamed by professionals for their children’s behaviours. When I have questioned this at CAMHS and at the GP I have been told that in many circumstances, the poor behaviour seen in children is down to parenting rather than any disability or illness requiring diagnosis. I feel this is not enough either. Speaking with a lady who has worked in young offenders institutions and pupil referral units, she is shocked by the numbers of youths there you have autism yet have not been formally diagnosed. How is this doing them any justice? How is leaving them undiagnosed and pushing the problem back on the parents to save the local health board money helping anyone? It really upsets me to think that if I had been less persistent and had not fought so strongly for my children, that they could easily have ended up there too. They were already experiencing difficulties at school in their early years there before being removed.
How many of our adult prison population have autism? PDA?
Haven’t they been let down?
In our local area, the role of CAMHS regarding autism is laid out by the local care commissioner. They state that CAMHS is to diagnose where appropriate. There is no follow up support or help for parents or children. You are posted your diagnosis report several weeks after the last assessment appointment and left with it. If you are lucky there is a two morning ‘course’ where CAMHS workers read through powerpoint slides and recommend books and groups that most parents there have already read or looked into.
With our three children, I was offered one space on one course. My husband has had no support at all.
There are services such as groups, social activities and charities locally that offer a wide variety of options for our children but you have to fight to get them. Once you are in they try to push you back out and it is beyond cliquey. One would assume that parents with children with additional needs such as autism would look out for their children and supervise them well, ensuring they are safe and content, coping well and not overwhelmed. We certainly do. Sadly this is not the case across the board. Most seem to relish the chance to sit and cuddle a mug of coffee instead and rush to point the finger anywhere else when trouble inevitably ensues. For this reason we have slowly withdrawn from the wide variety of activities they were doing, and have stuck now to a few that are well supervised and where there is a level of consistency for them all.
I hope that the process of diagnosis becomes easier over time for people and that support becomes easier to access.
Noone tells you about things like DLA (disability living allowance) for children with autism, carer’s allowance for parents who have to spend hours caring for their children, hours more than parents of children of a similar age without autism. There is little help with completing the daunting, soul destroying form when it finally arrived on your doormat (I actually have one renewal form here at the moment I need to complete). I recommend you search for cerebra DLA guide online if you are in this position and keep a diary of every little thing you do for your child for a week. It will fill a notebook but will amaze you and explain why you feel so utterly exhausted in every possible way.
Don’t fall into the trap of local parenting groups for families with disabled children- unless you are an extrovert, these quickly become a competition for who has the toughest life.
Do talk about your child, but not infront of them. They may have autism, but their self esteem will not be helped by this.
Try to focus on your child’s strengths and what they can do. Life will be far easier for you all.
If you are looking for a diagnosis of autism, or you suspect you/your child may have autism then I recommend visiting the National Autism Society website and having a good look around there.
Most of all, you know your child better than anyone. If you think they are struggling more than other children of their age then follow it up. Argue for them, advocate for them (respectfully) and don’t take no for an answer. You have got this.
