Symptom 4 5, 6, 7
Anyway I’m getting ahead of myself now, So she can walk now, she is well over a year old and beginning to “play” Or more appropriately put, annoy the hell out of Her brother . What ever he builds she follows and knocks down, She kicked apart or ran off with it, She would pick up objects and smash him over the head with it. She followed me everywhere. Was not content to just read a few books, Or play with some blocks whilst I done some washing or some hovering. She wasn’t interested in any TV Programmes. She would rather do the housework with me. Even if I sat down to play with her or read her a book, her attention span was so limited she would just run away and bash Him again. She would bang on my bin with wooden spoons, she would get tissue paper and stand for ages wiping the condensation off of my windows. She would lick them! In fact she used to lick a lot! She would spit all over herself when she was frustrated like a dribbling type spitting. Her growling was awful.
She used some words when she was little, Not Many but could say mumma, dada and a few others but by the time she got to about 18 months – 2 all I heard was grunting, screaming, scowling and the most prominent noise she used was a growl. You knew when something was wrong because all you could hear was her growling at someone. There were hardly any words anymore. She had regressed! (Children regressing in any way is a big thing where autism is concerned and the diagnosing criteria in some cases) Still at this point I didn’t even know a lot of the symptoms, I mean I had read up about it but just knew the ones that all the website were listing and not the ins and outs.
At some point I said to Kenny, “im going to the doctors with her, her behavior isn’t right somehow, she was different. She didn’t understand right from wrong. Nothing had meaning to her. I tried the naughty spot, I mean we were there for two weeks and still it was taking 100 times to get her to stay there and even then it was only cause she had fallen asleep haha! So we gave up.
I think she was about 2 years when I finally went to the doctors about her behavior. I had taken the quiz, I had read up about autism, A LOT. I went in there and I told the doctor all about it. We had already had two diagnoses in the family by now, both of Her cousins. One was diagnosed as classic Autism and the other Aspergers. I told him the history and all her symptoms and her behavior. Actually saying it all out loud to someone was a relief and I didn’t realize how long that initial appointment would take. I felt stupid. She was smiling, she listened, she done some things I asked of her, and she was social. But I just knew in my heart that it was deeper than those things. And then the Doctor listened to Her chest because she had a cough and I asked him to make sure she was ok, at this point was restless and just wanted to become the doctor. She took his stethoscope, which he happily gave up for his sanity I think and she climbed on his lap, pulled up his shirt and started listening to his chest. OMG I was so embarrassed. She was overly social (more on this later) So the Doctor listened and there are a few things I’ve left out of this because it wouldn’t be fair on Her to plaster it all over the Internet . But she had some symptoms that are quite sensitive. The Doctor wouldn’t refer us to CAMHS he said it wouldn’t be fair to send a child this age to a mental health service because it would stay on her record for life and he didn’t want to hinder her future!!! I though ok fair enough. It scared me a little. Was he saying she was mad?? I didn’t quite know but anyhow we were referred to the Health Visiting Team who was going to come and make a visit and spend some time doing some observations on Her.
Symptom 9, 10 , 11, 12, 13, 14, 15, 16, 17, 18, 19, 20 and so on………..
So at this time I was Pregnant again with Mooma. It was about March/April when they started visiting so I was about 20 weeks pregnant. I was shattered. Absolutely worn out to my core. Kenny would walk in the door at 5pm and I would hear his key turn and I would quite literally be passed out! He would have to do dinner and bath and bed. I used to nap in the day too. How you ask me? Well by this time she had an obsession at this point. It was a 20 second video of herself singing baa baa black sheep. Or trying too, It’s the cutest video in the whole world. But I would give her my phone and she would play it over and over and over again for about an hour. If she couldn’t watch it she would breakdown. Shw was so full on at this point, all her and S ever did was argue (nothing changes) But I tried to help him understand but he was only little. I shouted a LOT at this point. I’ve never smacked my children. But I used to loose my temper with shouting badly. All day every day all I did was scream at them. I hated the sound of my own voice. I hated myself. Every time I went to bed I would spend at least an hour beating myself up for shouting. S had withdrawn from me completely at this stage. I had alienated him. He was put second. She was first. Everything I did it was for her to keep her calm, to stop her screaming. She screamed and he got told off! I couldn’t help it I was in a really bad cycle. I thought he was intelligent enough to understand. He was. But I shouldn’t have dealt with it this way. He may have been intelligent enough but he was kid too. He wasn’t allowed to be himself. He was trapped inside a house with a pregnant screaming neurotic mother and Wildchild. Says it all really doesn’t it. I will never forgive myself for him loosing two years of what should have been fun, memory making, exploring the outside, free, years. I couldn’t breathe. I was lost!
She was a lovely HV so kind. Could see that Lolly was hard work but openly admitted she couldn’t pin point anything particular because of how social she was. She was so social. When the virgin man came round to install the TV she asked him if he had a willy!!! Then when he was leaving she asked for a kiss. I just had to explain to her that he was a stranger. She didn’t have a clue she had tuned out and was bashing Her brother again with the brand new remote!
She used to ask people a lot if they had a mini or a willy! I’m not quite sure why. But looking back maybe it was a literal thing. When she was first noticing her brothers body parts were different I had explained that boys have willies and girls have minnies. Maybe she was just wondering if it was a boy or a girl! She used to get too close to strangers when talking to them and really stare at them. I used to have to move her back a few paces, and she did this with her friends too. She is still the same, completely unaware of personal space.
She had become very violent by now. She rarely hit me anymore though. I think she knew I was the one and only person who knew her and was able to get her or do for her what she needed. But one day as we were playing on the floor she was quite happy but she switched very suddenly and stamped on my belly! It was excruciating. I was so upset. I had had miscarriages before so It made me really reallyparanoid. Most of her violence was aimed at Kenny and she used to punch or slap him round his face so hard. One time I saw it and I realized why she was doing it. It was because when he was speaking to her he was on her level looking her direct in the eye. It made her uncomfortable. No one should ever ever make anyone with autism look themdirectly in the eye. Unless they want to. I don’t care if they want respect or whatever it is you just don’t do it. She didn’t like it. He was invading her space and at this time her eye contact was sparse. He stopped doing it. She stopped slapping him. And actually her eye contact is brilliant now unless she’s having an “AUTY” day. Sometimes she can appear normal to us and other days its so obvious its unreal.
So the HV came and listened and watched. She played games with Her and all She wanted to do was take her notepad and pen and draw on her pad. (again nothing changes)
Eventually after about 9 months she referred us to the pediatrician. But she said a definite NO to Autism.
She had her own special routines she liked. It wasn’t anything specific in the day time but our bedtime routine was very specific. I would give her a bath, put her pj’s on and get her milk. Then I would lift her up and do ‘rock a bye baby’ and when the cradle fell I would drop her into her bed and say good night kiss and then immediately leave the room. God forbid I got any of that routine wrong because we would have to start all over again and she wouldn’t be getting to bed for hours!! This was when she was still in her cot. At 2 ½ by the way.
She has severe Sensory sensitivities. She hated her hair being brushed. Would scream so loud I was worried my neighbours would call social services. Actually I’m surprised no one already has she has some lungs on her that girl. I mentioned to the HV about Her hair and she decided to test it. Bearing in mind id already done it so it wasn’t knotty, Andshe’d given Lola her pad and pen so Lola was in role play heaven. She proceeded to brush her hair, and I swear She did not even murmur!!! Geeesh give me a break eh?
Her sleeping habits had properly deteriorated by this time. There’s me like just about to drop 9 months pregnant and She was up and down all night screaming. She couldn’t communicate with me. She didn’t know what was wrong with her. But she went to sleep fine, out like a light and then 20 minutes later she was up screaming and this lasted until well into the early hours. Again I just bloody well got on with it, maybe I was still on auto-pilot at this time? Who knows. But after a while it got to me. I started getting ratty at her in the night. I was like a walking zombie. That didn’t work. So I just held her and laid her back down when she was asleep again. Half an hour later I’d do exactly the same thing. For months and months and months I had not had one full nights sleep. Kenny couldn’t see to her because if she even heard his voice in the middle of the night all hell would break loose.
So we were referred YAY!!! Surely the proper professionals would see what I saw??
To be coninued ...........
To all those of you who have had babies, you will instantly understand this feeling I am about to describe, and for those who haven’t had children yet, just wait I’m telling you, it’s one of the single most greatest pleasures In the world.
When your baby, your little tiny bundle who has practically only learnt three things, eat sleep and cry since being born, giggles! Yes that all important, from the belly giggle that is so infectious it makes you cry with joy and you have to make yourself stop laughing so you can hear it properly.
You know that feeling? Treasure that memory forever, Some of you may even have managed to film that first giggle on your camera, like I managed to with Moo ma. Its something everyone talks about, ‘remember when she giggled for the first time’ Imagine not ever having that ‘first time’ with one of your children? Not hearing them giggle from the belly, hearing that sweet sound that you could listen to forever. We tried so hard to make her giggle and in turn she tried so hard at giving us that pleasure but for some reason it just didn’t materialize. We blamed ourselves, we weren’t funny enough. Why wouldn’t my baby giggle? We pretty much exhausted ourselves trying. We tried Peek a boo, Making silly noises, I mean we were acting proper gimp at one point. What was wrong with us? I had no idea. It was completely devastating.Sometimes she gave a meek little laugh which we got so excited about and then bam she wouldn’t/couldn’t giggle properly. At the time I never realized it could be a symptom of anything I just thought we weren’t that funny. The more we tried the more upsetting it became. Especially when you have other people in your life, friends and family with children of similar ages hitting these important milestones. There were more, rolling and sitting, crawling and walking were all delayed. My best friend had a baby 9 months after I had Lola and he had caught up with her quite quickly. Looking back at pictures of them together makes you realize how behind she actually was. At 14 months she was just like a baby, she was still tiny and hadn’t walked yet, would just roll around
I’m not completely sure at what age it was that her behaviour took a turn for the worse, But I can specifically remember saying to mum once “ I'm sure she has autism you know” it was a throw away remark that I hadn’t even thought about before, and it festered and festered. I was parked outside her house and I was trying to practically wrestle my 1 year old into her car seat. She was kicking me in the head, head butting me, slapping my face and pinching me. Finally she was in and she couldn’t hurt me no more so she turned on herself. Mainly on her arms, she would rest her teeth on her arms and push pressure on the arm until she hurt herself, or she would slap her forehead really hard. You know when you see women in the car park bargaining with their children to just stop going ridged and please get into the seat, that was me. But imagine this, every single time you tried to go out in the car or for a walk in the buggy you would be beaten up, mentally and physically. It didn’t stop once the buckles were locked, oh no we would have screaming until she choked, she would take off her shoes and throw them at me whilst driving. I just got on with it, ignored her, strapped her in whilst after the 5th time of being spat on that day I cried inside. No one could see the tears while I was driving, crying silently. A sob escaping now and then. I was tired. Eventually we just stayed in. I couldn’t take the pressure anymore. It was easier to live in our own bubble, doing what we wanted when we wanted. I still take her shoes off now when we go out in the car for fear of crashing and out of habit. I couldn’t understand it. Stanley was so good, so laid back he was horizontal. Why was my precious little princess so demanding, so controlling, violent and emotional. What had I done wrong? She wasn’t ever given any chocolate or sweets, or juices, we ate healthily. It must be me. I was a bad parent. And that throwaway comment I made to my mum that was festering in the back of my mind made a re-appearance. Could she possibly be autistic? Nope. She had eye contact and was social. Definitely not!! Don’t be so stupid!!!
She only got worse. By the time she was walking, she also learned how to undo her car seat belt and buggy straps, I mean this kid was like Houdini. I swear we went through three car seats and numerous buggies and each time I would say to Kenny “don’t worry she isn’t getting out of this one, I’ve tried it and its stiff for me” Pah! Within three minutes she was out. She had no danger awareness either so would just escape whilst I was driving. I didn’t know then what I knew now about Sensory Processing Disorder. She hated being confined, hated being strapped in and hated the feel of the straps on her shoulders. It physically hurt her. By age two she wouldn’t even entertain getting in a buggy, and she wouldn’t hold my hand either. She would scream blue murder on the street I was hurting her. I had to drag her everywhere. I couldn’t let go of her hand she would just leg it. She was a runner! Eventually I just used to run with her it was easier. You see what I mean about being controlling? She controlled our lives from day dot. I walked in whichever direction she wanted me to walk in, I drove whichever way she wanted me to drive. I stayed up cuddling her all night, because even after a full on day with her she would not sleep, well she would but only in my bed in my arms with her head touching my head. I remember even then how well we used to fit together her little forehead rested perfectly just in between my eyes on the bridge of my nose, yes we were that close, all night every night. God forbid I tried to sneakily change sides with Kenny for a break and a 10 minute nap. All hell would break loose and then we would have to start all over again. It was so draining, she was slowly zapping away my strength, my patience, my joy, my happiness. It was all being sucked out of me. I was just on auto pilot at one point.
At some point in between all this we moved house, from a flat so the children had their own bedrooms. But before they could go into them we needed to decorate. I wanted lolly to feel safe in her own space, and her brother to have his own getaway, so we moved them both into our room whilst we done it. Big Mistake! She was such a light sleeper when she was asleep that just me turning over would wake her. S slept through anything. But she would wake all night and not stop screaming until I put her in with me. It was nice to snuggle at first but then it just got ridiculous. She was like a little monkey. Clinging onto me throughout the night so I couldn’t move. I tried my hardest to sleep but couldn’t.
When her bedroom was finally finished she hated it (arghhhh) we done controlled crying! It worked after a few nights but she would still wake up and get in with me. I couldn’t make her shake this habit! Eventually something changed and she started sleeping properly in her room for the first time. I was even more shattered than before, not knowing what sleep felt like, sleep tired me out! That didn’t last long anyway, But were come back to the sleeping habits soon.
To be continued..........
Love J x
My body hated pregnancy, I however loved it, loved the feeling of baby kicking and dancing about inside me, I used to watch and film it for hours. I would know exactly where and how they were laying. I am that person who has like 20 photos of the same image. I Loved the Unknown, not knowing the sex of the baby, and if I could have just paused that moment in pregnancy I would have! I had My boy already he was perfect in every way, such a charmer, a polite little boy he was so clever. He amazed me every day. He grew into a little man too quickly, he was my best friend in the whole world. That was about to change and it took us all by surprise.
When I finally went into labour 4 days late, and I say finally because I was having contractions stop start for two weeks, and before you think it, NO it categorically was not Braxton hicks. I had already been through twelve hours of painful contractions before, so I know what they felt like. She was born within a few hours and so quick we were all in shock. She was distressed somewhat and had swallowed some meconium. We sorted her out and she was fine. She slept like the proverbial baby from 12am until 6 am in the morning. I was shattered I let her sleep and no one came to my room to tell me otherwise. She was coughing through the night and in the morning there was some yellow bile on the sheets but the midwife wasn’t too worried. We went home had lots of visitors it was fun!! I say that sarcastically because after just giving birth to something that should not logically be able to fit out of ‘there’, the last thing you feel like doing is hosting!! Off goes Kenny out for a while and leaves me with a house full of people. I mean I can barely move, I can barely sit, I don’t really know what to do with myself, but I get through it. She was perfect my 5lb 15oz of perfection. My little lolly pop, my princess. I love new born babies. I could have 10 of them. The way they smell (when they haven’t got a dirty nappy for the tenth time that day obviously) The way they look when they sleep. Their total innocence. The fact they are completely and utterly dependent upon me.
I wasn’t great at sharing my babies. I’m not going to lie I found having visitors really hard with her, Maybe it was baby blues but I just wanted to be left in my little bubble and snuggle her all to my self. I did share her though It was only fair she was just too beautiful to hide away. I look at pictures now of her when she was new born and I feel a pang. Like a little rip in my heart because we were blissfully unaware of the struggles we were all about to face. Every thing was fine, she was healthy, she was my little Lolly and I can still feel that feeling I got when I used to hold her in my arms and put my nose to her hair (what little bit she had) and smell that incredible smell that makes you heart skip a beat! Then I bring my self back to reality and I look at my gorgeous 5 year old who has all these struggles in such a short space of time and that little rip In my heart immediately heals. She’s still Lolly still that bundle of perfection that was placed in my arms, who I had such an immediate unconditional Love for.
It wasn’t long until her lungs opened up! I breastfed, then part breastfed until I coudn’t take her constant clinging anymore, I mean it was day and night and night and day and I was utterly exhausted. She would not leave me alone, When my mum used to pop round she always used to joke, “do you ever put that baby down” well actually no I couldn’t she wouldn’t let me she was glued to my hip. Poor Bambam I’m not normally concerned for myself but at that point I knew I had to give up breastfeeding for my own sanity and it just wasn’t fair on Him.
She then started screaming, all day and all night, quite literally until she was sick, I didn’t know what was wrong, we used infacol, gripe water, until finally I took her to the doctors who prescribed gaviscon. She was so bad that she would literally cry until she was sick and then once she was sick she was fine. Until she was fed and then the cycle started all over again! (ok I said I’d keep this short and sweet but I may have lied about that) It didn’t stop at the sickness though she used to choke, sometime just on bile but she would go blue and floppy and stop breathing and it was awful! One time we went to wales to visit kenny’s dad, she was 6 weeks old and so tiny and we were in the middle of nowhere I mean properly like out in the country on a farm miles away from anywhere. She was inconsolable, I gave her gripe water and she choked and couldn’t catch her breath, I handed her to Kenny as I got so scared I couldn’t watch, she was practically grey and all I could think of was that she wasn’t going to make it, no ambulance would make it here they’d have to send a helicopter, all that was running through my brain, whilst I shouted at Kenny to help her. And then I finally heard her scream again, I’ve never been so relieved to hear her cry. It was up there with one of the most terrifying things I have ever been through with my babies. I was distraught the whole weekend. It shook us all up.
You are probably thinking what’s this got to do with autism, but you’ll see just bare with me.
So for the next few months we trundled along with a screamer until eventually I had had enough of pulling my car over in the most dangerous of places, rushing round to my baby and dragging her out choking on vomit and going floppy! We were referred to a pediatrician who diagnosed reflux and put her on some special milk. My baby girl was fixed, YAY!
Ooohhhh nooooo, the infections, god the infections, tonsillitis, URTI’s, urine infections, very high temperature spikes that used to make her floppy and she was just always so so poorly. A common cold would see her hospitalized. At one point she had a URTI but she was so poorly with it they suspected Meningitis! It was hell, seeing my little baby being prodded and poked by loads of different doctors. Needles in and out of her hands. She was in so much pain. She had to stay in for about three days on a drip she was severely dehydrated. The hospital staff at RBH, On Lion/Dolphin ward were amazing. They took great care of Lolly and she perked up really quickly. Its strange because I took her to out of hours doctors that evening she was admitted and they were about to send us home with some antibiotics. As I was leaving I asked the doctor “why did her hands and feet keep going blue every time she got poorly."
They were so blue all the way to her finger nails. After hearing this info the doctor admitted us straight away. Her hands and feet still go blue now when she’s poorly although it isn’t such a scare factor anymore we are used to it. There has never been an explanation for this we have asked so many different doctors. Lola used to go blue just getting in the bath it was that bad. But apart from the constant infections she settled, she stopped screaming and she was such a good little girl. She went from one extreme to the other. Story of our lives still!! She loved to be cuddled, wrapped up tight, in fact she loved to be so cosy that she slept in her moses basket until she was 9 months old. She was literally hanging out of it. I say slept, what I really mean is stayed awake all night!!
to be continued ................
Down at a holiday park, and what other great way of raising some autism awareness than taking two children with autism and one possible autism?
Especially when the bingo started and the youngest undiagnosed started with full on echolalia, in the middle of the dance floor in her own little world!
22 two little ducks, quack quack
22 two little ducks quack quack
Two fat ladies 88
Two fat ladies 88
2 and 8 twenty eight
2 and 8 twenty eight
You get the drift right?
So we quieten her down, which let me tell you is no mean feat, when she wants to do something she will do it. In the middle of all this I'm running around after lolly who's like proper on one; we have our meal just turned up, moo ma copying every single number the bingo caller calls, lolly is desperate to play but these tickets are like £6 quid a book and I want that prize!!! So I'm appeasing her with the last tickets and a pencil.
She's not stupid! She's screaming, and running off. My book is torn to shreds, and by this point I'm pretty sure that even if I won they would call it as invalid as the book is such a state!
Everyone by now is staring! I'm not that fussed, more stressed out cause I want that prize and I know I've missed a few numbers, Jesus can't they just sit down for once while mummy plays bingo? No chance! There extra crazy.
I'm up by now, chasing them around the dance floor, moo ma makes a quick escape and lolly is agitated! She wants more sweets and the sweet man is also the bingo caller.
I'm running across the dance floor hoping and praying I don't slip up on lollys fruit slush she threw around earlier, and mentally placing the called numbers into a neat little box in my photo memory for when I make it safely back to the table.
Phew that was a close one, I've warned them now and shoved a new lolly in their gobs and the promise of another quid when the bingo finishes.
I sit down, grab that mental photo out my brain and start scribbling on my sorry looking bingo book. YES!! No one called bingo but I still have about 6 numbers on my sheet. In quick succession the caller calls 5 of my numbers! I'm winning I'm winning! 1TG!!!!!
Then he calls a few more and
22! Two little ducks!
22! Two little ducks!
I'd call that a massive Autism Parent success!!!!
As soon as I collected my winnings we were up and out of there! Shattered!!!