This is to you, the parent of a small child at soft play centre we visited today. You were with your friends all enjoying a natter and a cup of tea, whilst watching your small children play.
I'm sorry my daughter was staring at you.
I'm sorry that she stood so close.
I'm also sorry that instead of leaving you to it after having stared at you once, she came back time and time again and stood there dumbfounded not speaking, but staring once again.
My child is inquisitive, curious and interested,
She's a puzzle, of a million pieces, that have no edge,
No limits, left open for the world to add too, making her puzzle a trickery of games.
She's exhausting, and frustrating, she's confused and puddled. Her mind is like a thousand intertwining rivers, bending like the Mississippi, her thoughts swimming up stream, her mind tiring with each twist and turn the processing takes.
She wanted to speak to you, she wanted to tell you how cute your baby was, she wanted to ask his name, she wondered why he was crying, and screaming. And she almost certainly wanted to give him a cuddle and say hello to your beautiful baby boy.
She is NOT weird! She is interested.
Most of all though I am sorry for not being sorry for all those things, the only thing I'm actually sorry for is your attitude.
I'm sorry that you felt compelled to raise your eyebrows at your friend and direct them to my child, I'm sorry you had to nudge your other friend and practically point at my child to show her she was staring. Yes we all saw her, even your friends.
I'm also sorry that no one ever taught you how to talk to small children, I'm sorry that you were taught to laugh and mock and judge small children because they "look" different.
I saw you mock, and I saw you judge, I saw you nudge your friend and raise your eyebrows. Any idea how people like you make me feel? Infuriated is how!
Ever heard of a simple hello? She's just 6, she isn't going to bite off your arm,
(although actually I wouldn't put it past her)
Next time, set an example. Say hi, ask her name, If she's having fun, she may not answer you, she may run off, she may be surprised at the sudden interaction. But at least you wouldn't be mocking her. At least you'd be leading by example. Maybe you could also kindly teach your own children it's nice to be nice..........
It was a busy summer the year 2014! we got a massive 12ft pool in the garden and loads of toys, and had loads of garden parties with good friends and family. Lolly loved the water. I mentioned it before about her wanting to go in water at any opportunity. Shhhh but sometimes when I’m tidying up upstairs and she’s following me around I run her a bath and she stays in there for ages! And when she’s finished I turn the shower on and get at least another 20 minutes hehe!
After S's appointment the consultant sent out some social communication questionnaires for me and for his teacher to fill out, because at that point I had mentioned my concerns about noticing a few little traits that were becoming more apparent and making things hard for us all as a family. Lolly's peadiatrician has offered to give S a follow up appointment if his consultant wants to discharge him at any point. She really is lovely. So we got the questionnaires filled out and the SENCO (special education needs coordinator) gave them back to me to read and send off, I was surprised at what I was reading and we pretty much had the same concerns. It was like another blow to my stomach. Someone else has seen he struggles, not just me. But we were moving forward, the paperwork was sent off and they would either agree to an assessment based on the schools replies or reassure us they had no concerns based on the questionnaires.
Kenny had been for lots of appointments, he had been moved from one clinic to the next and after lots of blood tests, near passing out from the needles, lumbar puncture, MRI scan, cord scan, and they were all clear. The only sure diagnosis he had was Idiopathic – spastic – paraperisis. They all said this condition is normally on the back of a tropical disease, but didn’t know what it was. After another blood test and more near passing out we thought wed have the answer, but after weeks of trying to find out what the results were we were eventually told the blood test had been done wrong and we would need to repeat it! Annoying right? I've kept you lot waiting so long for the answers to his problems and his final diagnosis. We were in limbo, stuck between this rock and a hard place m, Kenny hates bloods tests. I felt so sorry for him. But he went and had it done and again after weeks of trying to get hold of his neurologist we received a letter, with a sort of diagnosis!! His blood test showed he had high levels of VERY LONG CHAIN FATTY ACIDS and given where they were raised they suspected a diagnosis of Adrenoleukodystrophy (X – Linked ALD)
At this point I should never have picked my phone up and googled!!! Never!! why I done it ill never know. There isn’t much research about this disease as its very very rare, I think I read that only 100,000 people have this disease in the world! My world came crashing down, I think google signposted me to the very worst case scenario. and at this point I would have preferred the MS diagnosis. Anything but this. I wanted someone to just take it away, wipe our slate clean so we could start again. It was just a dream wasn’t it? it couldn’t be happening to Kenny? For those of you that know Kenny, will agree that for him this path sucks! he’s a grafter, full of life, loves it, is the most selfless person I know, and its just not fair so why did this happen to him? He was referred to neuro – rehabilitation, they would manage his pain and his symptoms and try and confirm the diagnosis. He was sent for another blood test to confirm it. (he wasn’t happy about that) and referred onto a professor in neurology for diseases in oxford. (who later wanted another blood test haha)
Kenny was given lots of medication to try and we went home and started trying to organize them and get some kind of routine going.
So we actually had a really fun packed summer holiday. We kept busy with the pool, and BBQ’S, and family days. It was nice (ish) I’m not going to lie I hate the holidays. Its uncertain, disorganized, out of routine and quite frankly I just get fed up with the constant arguing, Lolly trying to take control and S not letting her play unless she does exactly as she’s told, and obviously Lolly never does as she’s told so it’s a massive struggle for them to play together and enjoy each others company. It was all consuming. Bless moo ma she just got on with it.
End of summer holidays and back to school, Year 3 for S and Year 1 for lolly, still with no extra support in place! I think its quite important to mention here that in my last chapters when talking about “the school” I was referring to one person inparticular, which was the head teacher. He didn’t make a return after the holidays for a reason which I cannot even type! But yes I hate to say it imagine the worst!,. The deputy head teacher stepped up as acting head teacher and things improved straight away. I’m so happy to say that. Because they got better, she listened to my concerns and adressed my problems as best as she could at that time. The educational Psychologist was booked in for September (that month) eeeek! and I had just sent off my appeal to the LA, (local authority) It was massive and cost me £21 to send by post haha. But I wasn’t messing about this time. I had numerous calls from the Local Authority reassuring me that even though they weren’t willing to assess at that point they were willing to help, and willing to come to school to mediate and implement a SAPS (support and achievement plan) Things had all changed this year too, the statement had changed to an EHCP (education health and care plan) and the code of practice had changed and everything had been shook up! I reassured the Local Authority that although they were helping I was still appealing! I received some massive booklet of a letter confirming court dates and hearing and deadlines I needed to stick to and it was very official it scared me so I promptly looked at the last date and hid it away in a drawer.
I received the Educational Psycologists report of which was very very insightful. Lolly was very behind and had definite issues and problems at school, She picked up on so much about Her its unreal. Its also important to note now too that I was so convinced that Lolly had a type of autism called PDA (pathological demand avoidance) She completely fit the whole criteria for it. In all her reports since she was tiny there are traits that are picked up on by the professionals. The demand avoidance, the need to be in control and the role play and mimicking! It was all there and although Lolly's pead said she could see it she wouldn’t diagnose it! I found solace, and support and friendship in the support group for it, there are thousands experiencing the same thing as me day in, day out. And it was there that taught me everything I needed to know about the system, statement process, requesting medical reports etc. and for that I am so thankful for that group.
One day, sometime at the end of October I received a phone call from the head of SEN at the local authority, She said to me that they have received the appeal, from the tribunal service and that after going through it all they have decided to concede the appeal and give her an assessment of her special education needs. I was so shocked can you imagine my reaction, I cried!!!
So just to re – cap, because its been a while. Sorry its taken me so so long to write again, my computer broke and then we had a time issue, its been a nightmare.
Where were we? so Lolly has a diagnosis, or several, the LA have agreed to do an assessment. And S is being investigated for NF1 and ASD. Kenny has a diagnosis of Adreno Leuko dystrophy and I have gone completely stir crazy haha not really!! Don’t get me wrong I have my moments. Don’t we all? Being completely honest I am majorly stressed out sometime to the point I worry about my health, but generally I’m fine, I’m not depressed or unhappy I’m quite positive and actually I genuinely love my life, I’m still young and fit and healthy. Although I have a lot to deal with, I’m quite a positive person. I’m the what will be will be type person, you know if its going to happen its going to happen we will deal with it and pull through because that’s what you do. Otherwise the whole family will break down. We cant have that, we all need to be strong and help each other, we need to support each other, and enjoy what we have. We have a good life. We have good jobs, and we have great friends and family whom I know will be there for us for the rest of our lives, and I’m so thankful for these people.
I had a few meetings with the assessment coordinator and she was quite positive that Lolly seemed a good candidate for an EHCP. The way she handled all the meetings was like she already knew that She would get one.
We had to get through Christmas first which was AWFUL!!!! I had arranged to have Christmas day at our house and cook for Kennys family and I was sick as a pig, All the kids got sick bugs and then I did, and then I got tonsillitis, chest infection and a tooth infection all at the same time. I hadn’t even finished Christmas shopping, Luckily I had been a bit more organized though cause what I had brought I had wrapped. I hadn’t done my food shop but I had ordered my meat from the butchers so atleast we had a turkey haha. Lolly was sick Christmas eve. I felt like I was proverbially dying! But we did it. it was nice and quite and lovely and boxing day I didn’t have a hangover Bonus!
Again I needn’t have bothered with toys because they are never played with!
I never sent Lolly back to school because a day after they went back she had to go hospital to have her tonsils and adenoids out. I didn’t want to confuse her. Bless my little poppet, we packed her bags and I done the normal thing in preparing her properly and she was less anxious, I spoke to the hospital staff when I got there about her going down first and apart from an emergency she went down about 2:45. They were great there though and didn’t tell her off too much. She was gone for ages. it was awful seeing her be put to sleep. Although it went really smoothly, she was so tiny and fragile and I felt awful, that look in her eyes as she was going was like betrayal. I also done something stupid and promised her no more tonsillitis!!!! oopsie.
I know children bounce back pretty quickly after things like this but damn this kid is a soldier. Two hours after her operation and she was wondering about the ward. The next day she was back to herself and causing trouble. We were discharged, and sent home and lolly was to stay in doors for the next two weeks and on bed rest…………… Yehright!!
We had a schedule of a few dates, and one of those was a meeting for us to go through what we wanted from the school and what support Lolly would need to be able to make progress. It was quite nerve wracking these appointments. Still doing things by myself, still organizing everything, still only being supported by my family and friends. This isn’t good enough really is it? in fact I find it absolutely terrible that there’s this little girl who has all these diagnoses, and not one professional is actively supporting us. I mean I didn’t even have any one whom I could use for advice. The reason why I was able to get us where we are today is thanks to the power of the internet, google and most importantly those strangers in the social network groups that I actively use. Without these I wouldn’t have gotten this far definitely not.
So the date that Lolly assessment goes to panel was the 21st of January. Just as lolly went back to school after her operation. Of course I phoned them on the same day, I was itching to know what had happened. They didn’t know, they hadn’t gotten the news in and I had to wait to another 24 hours before I found out, it was excruciating! But 24 hours later I found out that………….
WE WON!!!! She got her EHCPlan and I was so so relieved. I cried again. you have no idea how much relief I felt. She was allocated 17.5 hours of EXTRA provision. This was massive. It wasn’t a massive amount in terms of hours or money in fact it was a little bit piddly, BUT it was legally binding. It meant that whatever we write up as her plan had to be adhered to otherwise the school were breaking the law!!!!!! We sat through a couple more meetings, to prepare the ehcp and it was drafted, Which I promptly paid education equality a hefty amount for their input and checking services. They made sure it was worded correctly, and that all the reports were used to gain outcomes for the EHCP. They added stuff in and changed stuff around and deleted things out. I Then requested these changes after I had edited all the draft copy, and it was sent back to panel to be finalized. By March we had a final copy and the plan was in place. We still had to sit withthe school and the LA and breakdown her EHCP and put in to a SAP, (Support and Achievement plan) Formally IEP (Individual Education Plan) Which is a document that breaks down those bigger two year out comes into smaller termly outcomes. We still had disagreement with staff over Lolly's behaviour and what should be done and how she looks like she’s doing things on purpose etc and how to tell the difference. But we got through it and it was such a weight lifted off of me. This legally binding document was in place and it basically took on the role of me hehe but I wasn’t the law and hence why I was not listened to and ignored for years. So having this there and the staff putting things in place for lolly was like a godsend.
I nearly moved her schools, but when it came to the crunch I couldn’t do it, because although she wasn’t learning etc she knew the staff, and they knew her I decided to give it a year until her review and see where we stand from there.
So having this document in place meant that I could step back, it would do its thing and I wouldn’t have to keep on their backs, asking for things etc. It gave me more time to concentrate on S and what was happening with him in school. He wasn’t making much progress, he had been taken off of the SEN register last year and wasn’t getting much support for his education, his writing is barely legible, and he was having a real real tough time, with a couple of kids in his class, he was being hurt, regularly and I just felt awful for him. I spoke to the teachers, who promised to monitor it and they did, they made adjustments and they were vigilant but it wasn’t enough, he was still being hurt and I made a formal complaint. vigilance was stepped up again and still it didn’t stop, Stanley was coming home with writing on his legs saying he hated everyone and he was just generally unhappy and it was hard on all of us his behavior has been affected. A meeting was called and although it was primarily about the bullying, it turned into more of a meeting about his well being, and behavior traits. Things they are concerned about and that they are asking the EP to make an assessment (which still hasn't happened) and probably get him referred for ADHD. (Which I had to do) We’ve been concerned for S since he was in the very beginning of year two. It became apparent that he had regressed, quite badly. He was so bright, He was talking in sentences by the time he was 1 I mean seriously he never stopped. I couldn’t wait for bedtime because it meant peace and quiet. And I know that’s sad because some people have children who are mute, or non verbal but I’m also one of these people who don’t judge my own life and feelings by other people's circumstances. I’m sorry I know that’s blunt, I know there are people a lot worse off than us but that doesn’t negate my feelings, my emotions and how I’m supposed to think and feel. I have my life and I feel real things for my own circumstances, you can't just pick yourself up cause someone has it worse than you. It just doesn’t work like that. He also didn’t sit still, always bouncing off of the walls, and im not a juice and chocolate type mum either. Learning about Lollytaught me a lot about S and he definitely wasn’t copying, because he done lots of things before she was even born.
So Lolly has had the brain and Cord Scan and its all come back clear, so that’s amazing news. She’s also doing really well in school. She is coming out nicely and walking to the car like a good girl. I love these times she lets me hold her hand they are amazing.
S also has his follow up for NF1 on the 22ndJuly, I’m hoping his consultant discharges us and refers us to Lolly's Pediatrician. He has more marks this time though so I’m not sure if they will discharge.
So we have a very busy week this week (a year ago) im not sure I even know how im going to manage it!! here’swhat my weekly timetable for this week looks like.
Monday – Clean the whole house and take Moo to her Gymnast class (easy day)
11:30 Appointment at home for Kenny with the rehabilitation team, An Occupational Therapist and a Physio Therapist.
1:30 – Appointment at the school for a TAC (team around the child) Meeting. (which I still need to prepare for)
Wednesday – Kenny has a hospital appointment and Lolly has a Hosp appointment at the same time. Lolly's is for her frequent falls with a view to receiving Peidro Boots.
Thursday – Work
Friday – Gastroscopy for me (gallstones) and work!!
Plus all the normal day to day things we families do like cook, clean, pick up and drop offs to school. etcetc etc………..
That is a busy week!!
(lola at her brain and cord scan! And the masses of paperwork for the appeal)
Chapter 10 part 2!
Two days later that decision came (EHCP assessment) and it was not good. They had decided that Lolly didn't need an assessment and the letter would explain more.
When the letter arrived it stated that
Lollys special educational needs are not severe enough to be able to grant her an assessment. And due to LACK of evidence provided by the school they wouldn't be assessing but recommending that the school make an appointment with the EP ASAP! Sooooo this LACK of evidence that the school had submitted as part of her evidence consisted of 15 lines of illegible scribble. I swear I am not even exaggerating! It was awful. I was so so so mad it was unreal! I cried! All that hard work had been for nothing. Absolutely nothing! They knew I was applying, I had kept them in the loop, and they promised to start logging evidence!
Well luckily, me being me, had already written up my appeal hah!!! It was bigger than the last lot of evidence. I re submitted everything I could find and made a contents page, and referenced everything I could possibly reference in the reports against each other to prove why she did need an assessment and that her needs were severe enough! I proved that Lolly was socially, emotionally, mentally behind by at least a couple of years to her peers. I proved that in the short time she had been at preschool, and year R and all those many months she spent at a private nursery has had no effect on her learning at all. And she was in fact in danger of or in early stages of regressing. I sent my appeal to the courts. It was actually quite terrifying knowing that I was putting myself up there in the courts to actually have to speak on her behalf and fight them to assess her needs myself with no support from anyone. Inside I was scared. Some one once said to me, on the rare occasion I had opened up and spoke about my feelings, in respect of going to meetings and being the only one who sees her struggles and trying to make them understand, that, once you walk in that room, you should shed yourself of all emotion and forget about being this little girls mum, you need to become her lawyer! Her advocate, her voice. Speak for her, stand up for her and tell them what she is unable to tell them! And ever since then that is exactly what I have done! I'm hard faced and cold and to the point. And this is certainly not because I hold no emotion for Her, Nope! It's the complete opposite! I have too much, If I was to go in those meetings full of emotion and sadness for my little girl, then I would quite possibly be a blubbering wreck. And then I'd have the task of trying to defend my emotions as not being out of control/ depressed/ neurotic. Etc. they would not take me seriously. This was just the beginning. What else would I have to fight for? (Turns out every single thing imaginable) Why do I need to fight for what's right? Why can't they see what I see? Is it because of money? Probably! But I didn't care about that. And I will fight for the rest of my life for that little girl and the rest of my family, because we deserve to have a decent quality of life all of us! Together making those memories, laughing as a family, sharing jokes and cuddles and being proud of each other. And we/they will have one!
to be continued ...........
Ok I know I say this every single chapter and it's probably getting a bit repetitive now, but it's true, things got worse, we well and truly hit rock bottom going into 2014. Lollys behaviour was erratic, it's like she didn't care about anyone. She didn't care about other feelings, there was no reasoning with her, she was lashing out, her anxiety was extreme, and we were at our wits end with her, I didn't know what to do, we had the occupational health therapist strategies in place, I mean I went berserk, I brought weighted blankets, weighted rucksacks, bean bags with zips and poppers and sensory dens, sensory swings. (Swing pods,) all the lights you can imagine, bubble lamp, lava lamps salt rock lamps, she wasn't sleeping, she wasn't resting in the day. And by pick up time from school she was a complete and utter mess, nearly every day she was wetting herself, poor poppet! She had no friends. She loved people, and specifically spoke about a couple of children all the time but it just wasn't reciprocated in the same way. She loved adults too, and found companionship in a TA, whom she loved. The school described it as her special interest! (Not to me of course) but to the clinical professionals. So breaking point was this:
Just a normal pick up for us, me carrying Her out of school kicking and screaming, pushing a baby, whilst watching S, strapping her in the car only for her to kick and scream and bite herself the whole way home. By this time we had moved S to the front seat so that Lolly couldn't hurt him as she frequently did once in the car. It was a horrendous evening, Kenny was working late, it was the beginning of the year 2014 and as a builder things were slow over Christmas so he worked a lot of evenings at that time. I was bathing Lolly and Moo, Moo was 15 months and just sitting in the bath playing with her toys and tooth brush, I was sitting on the toilet. Lolly pushed Moos head under the water, must have been a few seconds. I must have zoned out, i really don't know, or I was looking the other way, I can't quite remember but I didn't have 100% focus on them. And I blamed myself a lot after this. I was so angry. With Lolly and with myself mostly! Why wasn't I watching them? I was sat right there! I grabbed Her hand off of moo's head and grabbed her out of the bath whacking her on the back, she was coughing and spluttering. But she was ok! She was fine. She didn't cry just coughed up and cuddled me. I was distraught I got Lolly out the bath and Sent her to her bedroom, she had a look of confusion, hurt, upset in her eyes. She didn't realise why mummy was shouting, she didn't realise why Moo was coughing and spluttering, she didn't realise what she had done! Here's why!
She has no understanding of consequences! No idea of what her actions may cause. She just doesn't! That doesn't stop me getting cross though! I couldn't even look at her and even in that moment I knew it wasn't her fault and the little look on her face whilst I put her in her room was devastating! But once again Moo needed me and I couldn't concentrate on Lolly I needed to concentrate on moo! And that night I've never been so grateful for an unannounced visitor! My sister walking in and taking control because to be honest I couldn't even think. I wanted to just run away, hide And stay there for a long long time. Becky went and dealt with Lolly and I phoned 111 because I had freaked myself out with something called delayed drowning! Once I had calmed myself down enough to look at Lolly I went to her room and she just melted in my arms. There wasn't any need for words right then I knew I had to protect Lolly even from herself because if I wasn't there to teach her that these things are wrong then what will she do next? She needed me to be calm, and stop shouting and understand her because to teach her these life skills I have to understand her inside and out!!
An ambulance was called and Moo was checked over and was fine. And back to the doctors I went the next day to demand that someone help us! We saw a different GP this time and this one I ask for every time to see Lolly He wrote a letter to camhs and within 2 weeks I received a letter for an appointment for an Ados (autism diagnostic observation schedule) within the next two weeks! I was so grateful!
Kenny has his lumbar puncture, he was scared but I said if Moo could have one without crying then he could manage it! We went together just like all his other appointments, he must feel like he has a second mother with me about! I make sure I go to every appointment, know everything there is to know! I'm quite overbearing actually when you look at it like that lol, but oh well. At least we all know what's going on if it was left to him we wouldn't know anything haha! So this lumbar puncture was the next test in line to confirm primary progressive multiple sclerosis. The procedure was done on a day ward and it was over and done with within a couple hours. It wasn't as bad as he was expecting and felt fine after. I made him go home and lay down for two days though hahaa!
The results!!!! All clear!!!!
We were ecstatic! But that didn't solve any of his problems, his legs were getting worse! He was unbalanced, uncoordinated and in a lot of pain daily. He describes it as - imagine you were to kneel on your legs for half an hour and they were to go all tingly and numb, that's how his legs feel constantly! I couldn't bare it! I have no idea how he manages to get through each and every day feeling like this!
So I went into school and told them Her appointment was imminent and that could they start the statement process, to which they agreed, they said they would start collecting evidence. Which they never. They told me that Lolly needed a diagnosis before they could apply for an assessment of her needs. I knew this to be false and so pulled them up on it. They agreed to apply. Which they never. So I applied myself, with bucketfuls of evidence as to why she needed extra funding. I researched all the correct terminologies, and laws, Sen code of practice quotes, got together all her reports the consultants and peads. Her school reports. It took an age! I worked on it for weeks.
Her Ados appointment came around very quickly, it was end of March sometime. I was so so nervous that she was going to be having a good day, because this happened quite frequently with Lolly, she would just switch. Be a completely different person to the point where I think I imagine things! But luckily she was normal! She was Lolly, and she behaved in a way that she would normally behave in. She was difficult, hard to reAd, uncontrollable, and had the need to control others. She was silent for most of the appointment. They done a series of games and used prompts, the whole thing took about an hour and Lolly showed enjoyment in one thing which was the bubbles. She smiled and laughed and shared her enjoyment. And as soon as they went away she growled and clammed up!
The speech and language therapist who conducted the Ados said she suspected a diagnosis would be given of autism but that she needed a clinical psychologist to go and view Her at school and have an interview with the teacher. (I now have access to that interview) and let me tell you this! For someone who was supposed to be fine at school, according to the teachers own admissions she Certainly wasn't if this questionnaire is anything to go by!
I had feedback from the clinical psychologist, who mentioned a few things but never really said anything. Wasn't worth the phone call if I'm honest! We just had to wait two weeks for the appointment for diagnosis if any. I convinced myself i would have to keep fighting, I was sure they were going to turn us away again. Waste of time. More hard work.More appointments. Turns out I needn't have worried. Lolly scored high on the Ados. And on the social communication questionnaires. She was diagnosed as ATYPICAL AUTISM. for those of you wondering why, it's because she displays quite different from a child with classic autism. She is social, sometimes too social. And she manages to hold all her anxiety in at school so they don't see the struggle. She masks all her symptoms, because she is a girl and naturally girls need to be social don't they? They have it built in them to get along in life and Lolly has adopted these coping mechanisms to survive. But as soon as mummy picks her up she can be herself and the bottle top comes off and she explodes all over me! Just before this though and This is where I am going to bring your attention to a little something called PDA! (Pathological demand avoidance!) something I came accross when googling the term "autism in girls" and "why is it hard to detect autism in girls" see I was Google maniac and I googled a lot at this point. I read everything. And when googling this it took me to a page on the national autistic society. With a clear description of a condition called PDA, which was at this point described as "a condition increasingly known as an autism spectrum disorder" (that's changed now) but last year no one would even acknowledge it, it's like all professionals had been brainwashed to ignore this term, they brushed it off, professed to not know what I was talking about. But when I read the page on PDA, it was quite literally like reading a chapter of her life, described her to a tee! And so I found a support group and researched some more. It was Her. She was PDA! How could she be so like this and it not be recognised! It was post code lottery. Some children and adults have a diagnosis of PDA, or with autism with added demand avoidance. It was so important she got an autism diagnosis that I didn't push it with her pead. Instead I adopted the styles and techniques and learning strategies that were having consistent positive effects for children with PDA and used these at home. With much more benefit! It was a struggle at first to convince Kenny, And it's symptoms and it's very diverse strategies. But I made Kenny and my mum fill out a PDA questionnaire and Lolly scored just as highly as when I scored her. I was so excited I found something that fit her. For once I agreed with the professionals she didn't quite fit the classic autism diagnosis. And going back to the PDA support group they inform me that basically atypical was PDA! We had more referrals from that diagnosing appointment too, Lolly was to see a gastro doctor as she always has bad belly and was frequently sick. Without having a bug! She suggested a reduced dairy diet, so no big cups of milk but milk on cereals was ok, and limit the cheese and yogurts etc. it helped but it didn't cure it. So by the next appointment Lolly was a completely dairy free diet and things were much better. Coeliacs disease was mentioned and she had bloods taken for genetics and coeliacs disease. At the same time S had his appointment for the neurofibromatosis and he had bloods taken for vit d deficiency and other things too. Stanley saw the neurology consultant who didn't diagnose nf1 (neurofibromatosis) because to have it you need at least 6 of the cafe au lait marks and he had 4. So he was to have an eye test to check the health of his eyes and come back in one year. We are at the year mark now and I've been calling them for month for an appointment and not heard a peep from them! Another battle! We have had his second follow up eye test though, where they flagged up dyslexia and have been referred to the dyslexia research centre for testing. He has six months worth of research sessions and then we get a full report and special glasses if needed. S was reporting that he sees some letters and numbers as colours.
So we had a diagnosis, we had a dairy free diet which was showing improvements. And I had sent off my request for an assessment of Lollys special educational needs, for a statement. And requested that the school get the EP (educational psychologist) in for a visit to assess her needs. They were adamant they weren't going to request this and kept putting me off stating they hadn't collected enough evidence etc and the the EP was very busy and that they thought She was ok. I felt so alone and that no one was supporting me, it was awful. I felt paranoid that they were talking behind my back! I sat there and I spent about two months collecting evidence, arranging more appointments for Her with the SALT, (speech and language) and OT (occupational therapist) for a full assessment of her needs as evidence towards an assessment. These reports showed that Lola needed a significant amount of extra support. The request was due to go to a panel of decision makers on 30th July 2014. This was Her birthday and we were at Peppa pig world. I was so anxious all day, I knew in my heart it would be bad news but I was still hoping. I phoned them and they said they had no news for me but would contact me ASAP with a decision.
(Picture of me above at peppa world phoning the LA haha
to be continued........
I had no qualms in phoning the people from the parenting course and telling them I wouldn't be back, and also the people who organised it too! I was so annoyed at the whole situation! Being forced on a course, where my youngest picked up an infection that completely knocked her for six was so awful! I had to make her my priority.
It was a very busy end to 2013, we had an appointment with another paediatrician for Lolly; the referral from the paediatrician that diagnosed Her hyper mobility properly, and also referred us for some insoles for her shoes to help her walk.
We were really apprehensive about this appointment we needed for Lolly to be herself that day and show them what we saw!
That didn't happen did it?
You know when you have a young baby and you are really worried there temp is sky high they have a rash and won't stop crying? You get to the doctors and what happens? Their temp has reduced from the cool journey, and so when they arrive they are all smiles and coos and dribbles, and you're sent away as an over reacting mummy! arghhhhh
This was one of those days, she was hard work, but she was compliant, did everything she was asked, had good eye contact, and more importantly she passed the "Sally Anne test"
For those of you who don't know this, it's a little test for youngsters who are being reviewed for being on the spectrum, and it looks at how the mind works and whether they have a thing called "theory of mind" where they are able to put themselves in the shoes of other people and think like them. A better explanation taken from The net is:
When I received her report I googled the Sally Anne test and realised that actually She hadn't passed this test! She failed it. But for some reason I don't know whether the paed was having a bad day or just got mixed up but Lolly chose the answer that a child with autism 'would normally' choose. God knows! But I was really frustrated about this, I felt like this was a last chance saloon, and we were being chucked out the door again! But she kept lolly under review and she had referred us to an Occupational health therapist because She was really clumsy and kept bumping into things, and had poor fine motor skills.
Pick up time was really bad for us too, Lolly was all over the place, I had three of them and it was hard, I'm not going to lie, I cried silently on the way home lots of times. I was in bits, school saw no problems with Her. She was model pupil! Always polite, had friends apparently, was working well, turn taking. Being a good girl. "She's young " “all children are like that" were the replies I got when asking them things, all my concerns were brushed under the carpet. Now I'm not going to go into too much detail about the school, just like I'm not going into too much detail about some other things Lolly done, purely out of respect. But let's just say it wasn't a good relationship. Which made things 100 times harder! I was having to pick Her up and carry her out of school kicking and screaming nearly every single day, whilst pushing a buggy, and watching S too, who would, as it happens just run off, hide, be a bit of a pickle. Etc! People would stare at me, children would ask questions, i felt the teacher’s eyes boring into the back of me every time i walked out. I would dread that time! I never found a good pick up routine, because I had S at one end of the school and Lolly at the other it was hard to get the balance right, and by the time id got to Her she would be at breaking point, hitting Moo and S in the car, in the end S would sit in the front so she couldn't get to him, she would scream and scream until we got home and she could get into her PJ! Then she'd be comfortable and calm down a little! (I never realised this though until later on)
Lolly would be so exhausted from her day of pretending to be "model child" that she would fall asleep. Completely wiped out!
We were struggling as a whole family to do anything! Anything angered her, I mean anything. All day long we placed demands on her without realising what we were doing and because she wasn't in control she got worse. I use this sentence a lot in these chapters, but it really did get worse and worse and worse. Things were heightened at the beginning of a school term and the end of a school holiday. We soon noticed a real pattern of behaviours.
At the same time both children were issued IEP's (independent education plans) it's a document that a child who has special education needs has to breakdown their leaning into smaller constituent parts to scaffold their learning. S was really really behind! I was quite concerned and questioned dyslexia, and ASD, and was brushed off. Nope he's just a bit slower and will catch up. Or so they thought! But I have to give S' year two teacher praise because she picked up on his SEN straight away and actioned more help for him, which I'm really grateful for. She was lovely, and listened well and had really good communication.
Kenny was asked to go for a lumbar puncture too, to confirm multiple sclerosis. His consultant neurologist was sure that this was his diagnosis and was expecting the results back as confirmation so we could get a care plan put together! Sounded really final! We weren't talking about it, at all. We pretty much ignored it. We had one drunken conversation where we both got a bit upset but that was it! We just supported each other the best we could. Again our lives were like we were being remote controlled! Looking back on it we were like robots! Just about hanging on to each day and scrambling through, dealing with things as they arose. We were having lots of appointments at this time. His lumbar puncture wasn't until the next year in march, and we had to get through Lolly OT appointment and Christmas first.
Lolly's appointment with the occupational health therapist was a real eye opener! It was the beginning of the beginning and finally I felt we were beginning to piece together my little princess!
I was asked to fill out this questionnaire like paper, whilst she done some things with Her, some little games, and drawing, and sorting little pegs and stuff. I filled it out for her and sat in silence because I asked to take a back seat and let her get on with it. Lolly took to her really quickly, she was a lovely lady, always smiling, and cheery and happy and she understood! She looked at my questionnaires and done the scoring on it and was shocked! In the referral that was sent to her about Lolly stated she had no sensory issues. Well my questionnaire seriously contradicted their referral and we were told She suffered pretty majorly with sensory processing difficulties. I had no idea what this was really, I hadn't researched it and I didn't know any techniques. It was a complete shock to me, she also noted that were awaiting an autism diagnosis and I thought this was a pretty good statement because I hadn't told her this, she must have been told it in the referral someone somewhere had Her on their radar and we were within sights of a diagnosis. I was invited to attend a conference about SPD along with Lollys teacher if they wanted to attend, and the report and an invite would be sent out to them. She noted that whilst I was doing the form and she was playing with Lolly, that she asked what a noise was, (it was an ambulance in the very very background) and the OT could barely hear it. Lolly is very sensitive to sounds. This was a classic example and glad it happened on the day. She also noted Her language delays and lolly asked the OT "are you an ambulance " which meant "are you a doctor" lol bless her heart! It was so sweet. She gave us so many strategies and leaflets and stuff and I went home and I researched the life out if sensory processing disorder. I joined support groups to gain as much knowledge as I could to help her. I brought chew toys for Lolly a den so she could have a calm space at home, I filled her bedroom with bubble lamps, and lava lamps and little dairy lights, and spinning toys, and anything else you could imagine. The first two nights after she had her den in her room she slept in it fully all night long! I swear I could have kissed her therapist! I was ecstatic! It didn't last! Like most things with Her we have to have a good turn around with things otherwise her body gets used to then and they don't have the same effect. I brought her a weighted blanket, again she slept through for about a week. And then she didn't like it anymore and refused to use it. I done deep pressure massaging after a calm got bath and we settled into a great routine! Lolly would make me play this game where I would rub, tickle, scratch, her legs according to the colour of the lights in her bubble lamp, every night I would rub and then tickle and then scratch, when she said so. It was so tiring but it was working, and her funny little ways made me so happy because when she wasn't pretending to be someone she wasn't and she was being completely Herself she was just so scrumptious. The deep pressure massage really calmed Her down, I couldn't believe that a 4 year old was enjoying a massage the way she did! I have a voice recoding of lolly during one of these massages and it's so funny. I think this was the bed time routine that she liked the most. Apart from her wibbly pig one,
Her wibbly pig one - she had a set if books and would only let me read one of these books, called wibbly pig can dance, and after a wobbly two weeks if her trying to be in control and be the mummy, and snatch the book away and turn the pages, or read it, and make me sit on the floor, she settled down and we got a good routine going. She would fall asleep as soon I read the book. I read this book to her more than a hundred times and I had to read it in a specific way, very very specific and if I didn't I would have to start again. Can you imagine this at 7pm every night after a full on day with her a screaming reflux, dairy intolerant baby and talkaholic S. It was torture! But we for through it.And into the next routine!
So the recommendations from the OT. Were put in place, and it was such an eye opener, everything completely made sense, she was sensory processing disorder, the books were written about her! Why hadn't I known about this! Why hadn't someone else picked up on it? Such a waste if two years in the NHS system and no one picked up on it! She was just an extreme version of normal! So flipping annoying! Lolly's teacher and I went to the conference and she was shocked! In the middle of it she leant over to me and whispered "that is so your daughter"
Was it finally becoming noticeable? Were we going to get some help now? People were seeing and believing surely things would all come together and the school would support me in a diagnosis and put more recommendations in place? What are the odds are on this? Anyone care to hazard a guess?
So following on from the nanny........
It was great, jade was amazing, the kids knew her and she knew them so it was easier for me to relax back into work. They were hard work for her but she was a natural! It was getting on for summer now and summer holidays were nearly upon us again! Lolly would be due to start in reception after the holidays and S would go into year 2. I was excited about this because I was told school are much better at picking up on things, like autism etcand they were quick
with referrals. I was just Hoping and praying they noticed and we had some support from them. Although nursery picked up on a lot of Lola's traits and thought something wasn't quite right, again they didn't suspect autism because of social side. It was so hard. Some family members by now were starting to pick up on it, and listen to me. I think I Had banged on for so long that they pretty much had no choice but to go along with it! So we are at about 3years 9 months now, and Lolly was so demanding, she was so controlling, every thing we did revolved around her, she had an obsession with shoes was getting worse, every time someone came round she wouldnt wait for them to take them off she would just ask for their shoes and wear them around changing into everyone's. This was particularly hard for other children especially when they didn't want anyone else wearing their shoes. I didn't ever see it as a problem I would let her wear any. It wasn't causing any harm. But other children didn't want their shoes being worn, which was understandable and It caused problems, because she was so obsessed she would start screaming, and breakdown. I had stopped going shopping with her I couldn't take her anywhere, I mean anywhere, I ordered everything online, and to this day amazon prime is my best friend! I used to love Christmas shopping and buying those little personal trinkets, but I just couldn't do it, and we couldn't do it all as a family, god we tried, (I'll come to our MK shopping trip in a while, but it was no use, she was having between 10-15 meltdowns per day, and they were meltdowns. They weren't tantrums. They were full blown meltdowns. She didn't care who or what she hurt, she had no control over herself, and didn't care who was watching. Things were really tough, she was more and more violent, especially with Moo I had to keep them completely separate. I couldn't just lay Her down for a nap, I had to keep constant watch over them to make sure she wasn't hurting her. She would just pick her up and drop her on the floor, or stamp on her, pinch her or slap her. It would come out of the blue too, so we could just be sat there nicely and bam she would strike! I was researching a lot. Always reading, about autism. I was obsessed! Every evening I would settle down to read up about it, find information on girls and why they presented differently, I would write it all down. I never gave in! Not once I couldn't afford to! We were at breaking point!! Everyone in the family was suffering, I had such little time for anyone it was unreal. Who will help us? There wasn't anyone willing to listen, we had been discharged. It was the end of the road for that wasn't it?
So it was the end of the summer term and time for Lola to take part in a sports day, and a little production at preschool. I was so excited even though I knew she would not do it! The production was based around nursery rhymes. Which she was singing all day long at the top of her voice. She would practically wake up singing, I swear it was like having a little musical alarm, it was the sweetest thing, to hear that coming from her mouth as soon as she'd opened her eyes was amazing! We went to watch and got seats at the front, as you do! It all started and she froze, she couldn't sing, clap, stand, anything, "she was only little all children are like this" would be the reply to anything that was different about her. I hated it! It was dismissive, I didn't need things sugar coated for me, I wanted cold hard facts. I needed to know what my child was like without me, not the watered down version but the warts and all version! be honest with me, tell me the truth. I'm not going to cry! Honestly! (Well not in front of them obviously) I swear I felt like everyone was conspiring against me. Why didn't they want to see what I saw. Why couldn't they open their minds? Just a little bit, and realise that actually when you have 30 children in a class and she's the only one "doing" these "things" then it isn't "normal" and all children don't do it!!!!! Logic tells you that right? So why could they not believe!!! Arghhhhhh! I was so frustrated! I needed support. I cried that day! I cried for myself and I cried for Her. I cried because it was a realisation that even though no one believes it was autism! I did, and I also knew that this wasn't going to be the only production she froze in. And that I probably wouldn't get to see her do many plays, or carols, or sports day. Can you Imagine that? It's heartbreaking!
S does fabulous in his plays! He loves them, when he does an assembly he's always up, straight, and loud and clear! He makes me so proud up there on that stage. And Moo is a born entertainer, but that doesn't take away the upset and the disappointment of not seeing Lolly open up and perform.
It was sports day next, and we were so shocked, She participated in most of the activities with extra support. She did amazing! I cried that day too out of sheer excitement and enjoyment! They then had an entertainer and party food and she enjoyed herself so so much! She sat at the front and watched the whole thing avidly. You know when they ask for volunteers but say "you must be sat down on your bottom" and She is always on her feet before the instructions and she never gets a go because she's not listening! I feel so sorry for her! She tried so hard that day, to listen and do as she's told. But sometimes she just can't contain herself. She fidgets, instructions get lost, she mis-heard,Misunderstands. But that didn't matter because she was just disruptive and naughty! She should listen more and then she might get picked! Yeh right!
Summertime, and the holidays, a chance to spend time with your families, days out, picnics, the park, shopping, meeting to with friends. We stayed in. The whole summer. Apart from when we went to Ibiza for my brothers wedding.
On the 25th June 2013 Lola had her appointment for hyper mobility. It was an eye opener, they done some checks on her and yes she was hyper mobile, quite severely actually, her beighton score was 6/9 which means she was hyper mobile in 6 out of 9 joints and also had flat feet. She was referred for shoe inserts. The paediatrician also asked me about her behaviour. She was trying to escape, she was climbing on the notes trolley, she was turning the taps on and off full blast she kept trying yo draw all over her notes and be the doctor! She was erratic! I decided to treat Her in front of the pead as a normal child and so I told her off. I got down on her level, put her on the naughty spot and told her she had to wait three minutes because she was naughty! Lola screamed and growled at me, she spat in my face and all down her clothes and legged it for the door! Normal??? I think not! The paediatrician agreed and said she would refer us back to the DR we saw before! Um I think not. I never wanted to see that woman again! So she referred us to another paediatrician. I was so happy! I could have kissed her! And when I received her report well I was so relieved!
It states "mum has tried managing her appropriately with time out which does not have any effect" Yay!!!!!!! Some one finally on my page! Who would have thought it? Certainly not me I was expecting another knock back, another "no she's just naughty here go on a parenting course" which I still had to do by the way to prove I was willing to try all strategies offered to me! I was even told by the HV that if I didn't attend the referral would be taken away!!! (more on the course later)
So Ibiza! ! It was lovely to get away but wow! Full on! Screaming all night. Every meal time was exhausting. The whole time round by the pool we were on edge! We couldn't settle. She is a proper water baby always wants to be swimming, in the deep end no less! So one of us would have to be in there with her. The evenings were a game of cat and mouse! She would frighten the lives out of us it took a second and she would disappear! Just like that! S learned to swim! I was so proud! He was so confident and he loved it! and Moo took her first few steps too. It was a holiday of milestones. and a bloody expensive one at that. But it was amazing to be abroad with my whole family and make precious memories.
I'm just going to go back a few months and bring you up to speed on another factor of our lives that we had been shoved hard in the face by! Kenny was having some tests. He had a problem with walking and his legs hurt. He'd had this problem for years but after the trauma of the broken collar bone it made it progress more quickly (that's my theory anyway) he was really struggling. Things were bad anyway with Lolly but Kenny's mobility had gotten more noticeable by the day, people were picking up on it and it was hard! He went to his GP who done some tests on him and referred him to a neurologist straight away. We had the first appointment before our holiday and the consultant didn't give much away, we (I) asked lots if questions but he refused to name any condition until he'd had further tests done. They sent him for a cord scan. We had that done before we went too and just had to wait for the results! It made a tense holiday! I was worrying so much! And so was Kenny. We had so little time for ourselves that we hardly spoke about it!
We landed in England and hit back to reality quite sharpish. It was Moos 1st birthday and Lolly was due to start school. We also had an appointment through for Kenny's results, which they had marked as urgent. We had it hanging over our heads the whole time we were away like this massive elephant! Did he have cancer? What else could it have been? It wasn't long before we were given a pre diagnosis! And we both felt like our world was crashing down!
Chapter 8 part 2
Back and fresh from Ibiza carrying the most violent sick bug! (which we didn't realise) and it was Moo's 1st birthday, we had one day to organise a birthday party, and we did it!!! It was a huge success. Apart from a few guests and all three of mine catching this bug! Luckily it passed quickly and they were able to go back to school. It was Lollys first day at reception and she waltzed straight in. That didn't last long as soon as she realised it was long term she started getting upset and screaming every time I left which is normal right? Of course it is, she’s only a baby. Some things were normal. Other things were not and once again her behaviour at home deteriorated. Quite dramatically!
S was in year 2 and he liked his new teacher! (So did I) because I knew her name and I knew that she wasn't going to change every 5 minutes!
In the summer holidays Kenny had been sent for a cord scan. And the results were back in. We went to the appointment and were so nervous. I honestly couldn't get cancer out of my mind! We still hadn't spoken about it. It was just there like a third body with us everywhere we went. It was In bed with us, in the car, it came on holiday and When we went shopping this thing wouldn't allow us any space, we didn't know what it was, we couldn’t get rid of it. Nobody invited it to stay but it did! It didn't care that we didn't have time for it, or energy. Apparently it belonged to us! We weren't getting rid of it anytime soon and it was only going to get worse!
Primary progressive multiple sclerosis! Is what was (pre) diagnosed. Going by the symptoms and how long it had been there for. Suddenly this thing had a name. And it really wasn't something we wanted to hear! Id heard about this disease, I knew what it was capable of. This is why my world was crashing down. I could see into the future with just four words. I knew what was going to happen and it wasn't going to end happily! I felt sick!
Kenny on the other hand didn't have a clue. He didn't know what the prognosis was. He was blind. I never told him. I just said it wasn't nice. And then I let google do the talking. We walked out of the neurologists office in a daze, hand in hand, no words were spoken between us. We didn’t need words. The neurologist had just apologized to us. It was serious. The walk back to the car is a bit blurred. It felt like an out of body experience. Like someone had a remote control for us and we were just doing what was expected. What was expected? Where do we go from here? I couldn’t help but think the worst. It was impossible to imagine anything else other than Kenny becoming totally dependent on me. In a wheelchair, not working, not going out, housebound. I couldn’t get these images out of my head. Every single night that big elephant was back in the room again.
I said it was a (pre) diagnosis because the consultant just wanted to confirm things with tests. So he was referred for an MRI scan and lumbar puncture.
In the meantime, S got a bout of tonsillitis, so I took him to the west call, and a GP examined him, whilst doing so she noticed some birthmarks over his body, and asked if he had anymore. When I said yes, and showed her, she said that I need to go to my GP and request a referral to the childrensneurologist for a condition called neuro fibro matosis (which is all one word) when I got home I googled! Even though she warned me not to! And god I wish I hadn't! I was so scared. He had symptoms that seemed to relate with this as I was also noticing some ASD and sensory signs. It wasn't because he was copying Lola, it was because of Lolly that I had researched and realisedhe's been doing things since way before she could. So I now had another member of my family under some sort of doctor! You'll now understand why Moo is 2 1/2 and I never turned up for her toddler check up! (We still haven't been)
I also started my parenting course in September of this year (2013) I have to say and excuse my French for my parents reading this but what a load of bollocks!
I was not a bad parent! Every technique they'd suggested i already did! This course was not for me But I had to do it, If I didn't I would be taken off their lists. So I carried on. The second week in, there was a note on the door of the crèche saying there was a case of slapped cheek, so I questioned them about it. I wanted to know if it was clean. They probably thought I was being a para Pete but Moo was so poorly, even if I had a bunch of flowers in my house she would instantly have a high temp runny nose and cough! I swear I'm not exaggerating. Her pollen allergy was unbelievable. Worse than mine and that's saying something! They told me it would be fine, the case was in the nursery and it hadn't travelled this far, I should have trusted my instincts, which were to turn around and go home. But I couldn't I had to see this through for lolly, she needed this! Even if it was ridiculous. I had to do it.
That night Moo ma, my poorly little baby started coughing, it came on so quickly! This was Tuesday. By Wednesday morning, she was covered in a rash and boiling hot. Doctors said it was viral. (obviously)She was having maximum doses of calpol and nurofen, she was completely naked and had a temp of 40 I was struggling to bring down. I was circulating air in the room with open windows. She was very poorly. By Thursday, I took her back to the doctor who again said just viral! On Friday, I phoned 111 because she was gasping for breath and she had a rash, she couldn't breath her breathing was very laboured. She kept coming up in really weird looking red blotches, under the skin. They were almost like scald marks. And she was just asleep. Taking little water and not even opening her eyes! She was just laid on me exhausted, lifeless! They sent her an ambulance, and we were taken to the hospital. She was being sick where her temp was spiking constantly. When we got there they examined her and kept her in for observation because of the rash, she was all smiles when we got there, like they are. Over protective mummy over reacts again, I was on my own because we needed Kenny to pick the others up from school and after a while my mum and sister turned up. I had already told the pead that I wasn’t confident enough to take her home and that I wanted Her kept in for observations at least until late afternoon and she agreed, once she saw I had other there she basically forced me to leave with Moo and under pressure I agreed. Stupid mistake, as soon as we left She deteriorated once again, and by Saturday morning I took her to the walk in center. She was being sick everywhere from her temp spikes and even with calpol and nurofen her temp was spiking every hour. So even the medicines weren’t working. It was about an hour ans we were seen again and sent home. The journey and disruption had woken connie and she was all smiles. Typical. Once home she slept all day, I mean all day, she didn’t feed, she didn’t wee, she didn’t do nothing at all just squirmed around on the sofa, asleep for hours and hours. I had seen over 5 doctors this week and not one of them thought she was of any concern because not one of them could be bothered to observe her for longer than 30 minutes. By midnight on Saturday I had had enough, she was practically lifeless. Temperature of over 40 after having both calpol and nurofen and she wasn’t drinking and was not waking up for me. I went and picked my mum up and we took her to A and E where once again we weren’t taken seriously, doctors were just wondering around, not even concerened we were there. She was being sick, burning, and lifeless and some prat of a teenager had decided to take ecstasy and so had 5 doctors all for himself. By the time they got to my poor baby, her blood pressure was through the roof! She was severely dehydrated and not rousable. They inserted a cannula into her arm and she didn’t even wake up!!! I was fuming! When the doctor came around to see her, she was poking and prodding her and sitting her up and She was just falling down back onto the bed staying asleep
They ordered tests for her ASAP. Meningitis was what they thought. Lumbar Puncture is what they were going to do. I was terrified. She looked so tiny. Just lying there in a massive cot all wired up. I’m so thankful that my friend was working that day and I asked her to hold Moo during the lumbar puncture for me as they wouldn’t allow me in there.
Walking down the corridor in those first minutes after she was taken was the 3rd worst time of my life! Remember the other 2? I could have collapsed,all my energy was zapped out of me. My legs went to jelly and I have no idea how I even made it back to her room. Within 15 minutes it was all over and she was back in her room. It wasn’t meningitis. It was tonsillitis! Can you believe it?? All that for tonsillitis, if they would have just given her antibiotics in the beginning then I very much doubt it would have gotten that far.
So Kenny's results from his brain scan came back clear!!! We were overjoyed! After talking about it and reading it through we never believed it was PPMS anyway! Doctors are always wrong they could be with us too couldn't they?
To be continued .........
So we carried on, we had to just get through it, Lolly was still up every single night about 20-30 mins after she's fallen asleep and every half hour thereafter until the early hours. It was awful, I hardly ever had any sleep. Just one night I would have liked, but still lolly wouldn’t allow Kenny to take my place, she was completely dependent on me, and then we would wake up and she would refuse and refuse to get dressed for the morning trip to take S to school. It was her socks that caused the most problems. I did not know or understand what I was doing but every time I was putting her socks on she was screaming and shouting and hitting, she would take them off throw them, it would take us forever to get it right. She couldn't explain either. Her communication was still very limited. And although she was talking in sentences, it was all muddled up, and she could not convey her feelings. She would get things round the wrong way, say things in a jumble. Back to front and inside out! If took me months to work out this sock malarkey! But we have it down now! They have to be just right. Literally perfect and god forbid you don't get it right! I'm glad she learned to do it herself. Her shoes too, had to be just right, the Velcro, straps, buttons, laces, or whatever it may be had to be just the way she wanted it. In fact she has this pair of shoes (one of many) and if Kenny isn’t here she wont wear them because I cant tie the laces how she like them, and exactly the same on both feet had to be matching, matching laces length matching Velcro length, she would sit there ages redoing the Velcro straps so they were equal! Do you know how hard this is to understand and get right when you have a child who uses growling, and screaming for communication? She couldn't say do it like this mum, or like that mum, no I don't like that mum, Etc. We used to get really stressed and annoyed with each other. If she wanted the music louder she would say “put the music on harder" and things like that.
I noticed I was having to repeat myself a lot, Callung her name over and over again, she never responded to her name, if I wanted her to respond to me I would have to get on her level and talk, she would never look at me though she would angle her head to the side or up high and look above me, like she wasn't listening. The amount of heart stopping moments I've had when I've heard the biggest bang and she doesn't respond to her name, you call and call and call whilst running upstairs to find her sitting on her floor lining up some books. I'm like "Lolly why didn't you answer me" to be met with no reply, I just walk away glad she's ok! That's another thing we’re used to now, her unresponsiveness. We used to think she's just ignoring us. But children with autism, or SPD take much longer to process things, so they need extra time than ‘normal’ children. And even then, if they are engrossed in something they more than likely won't respond anyway. Her hearing was checked lots of times actually, and her attention span was always noted at these appointments too. She constantly needed to be refocused, prompted. But she always had to be in control, always choosing which games she would use and which she wouldn't. Her speech and language reports were the same also, the therapist always reported it was an inaccurate assessment due to her lack of attention and concentration, and she always scored low. At her review for speech and language Lolly just passed all the tests by the skin of her teeth, and we were discharged. Again!! She was age appropriate for all the tests. However once again, her attention and focus was under scrutiny and her need for control was noted. She had to be in control, even in the doctors office.
So getting S to school was proving more difficult, he was crying on the way in, this wasn't like Him he was always bright eyed And bushy tailed for school, loved socialising. He was getting too difficult for the nanny as well, so now she had to contend with Lolly, S And a 7 month old. Inevitably the nanny quit, she couldn't cope. Her sick days became more and more until eventually we just decided it best she never returned. She was a lovely girl too, but very young. I don't blame her if I was allowed to quit id hand my notice in tomorrow (just joking)
So now I needed a new nanny! Kenny's sister came to the rescue. She wrote out a report on Lolly whichI'm going to add in here so you can see her from someone else's perspective.
I used to be L nanny, I would spend 3-4 days with her a week.
The problems would start as soon as I would arrive at the house, she would straight away run to her baby sister and take food from her or take her bottle/dummy away, because of this she would cry then L would pretend to be the adult, sometimes she would just give the item back other times she would tell her sister off.
I always found it difficult to get L to sit and finish a meal, she would constantly ask for something to eat but rather than have something at a meal time she would seem to graze on things all day.
when it was time to get ready for school L would find it difficult to choose clothing, it could be boiling hot and she would want to wear a jumper, sometimes she wanted to dress like a boy and wear her brothers clothes. I was never able to dress L in anything with 3/4 length sleeves or legs as she would think they wasn’t on properly, i also couldn’t put a short sleeved top with a cardigan or jumper on top, it wouldn’t just be a case of L saying she didn’t like it, sometimes she would hysterically cry, hit me or someone around her or seem to get confused and tell her mum that I had hit her!
L would also have a absolute meltdown when putting on her socks if the line wasn’t lined up accurately and would also want to wear inappropriate odd or small shoes to school, if I told L that she couldn’t wear them her reply would be to tell me she’s not going to play school or that she was going to tell her mum of me or she would just run off!
Jodie (L mum) would have to do her hair for her most mornings, or sometimes it took two of us, we would have to chase her round and she would scream at the top of her lungs saying it was hurting, we tried different things we got her, her own brush and new hair things, a spray for detangling that we told her was magic spray but still she would have such a ordeal just to get her hair done and would often get herself so upset about it.
when it came to the school run there was never a easier or preferred method, if we went in the car the first thing she would do is take her shoes of, she would sometimes throw them at me whilst driving, she would take things off her sister and she would constantly repeat something irrelevant, if Ianswered her she would say "what?" so I would repeat myself and she would ask "what?" again, if iasked L to repeat what I had said she usually could so she knew I had answered but didn’t even seem to understand that the question had been answered and move on, this occurred a lot throughout the day every day.
When walking to school L would want to always walk the same way, if we had to divert for any reason it would be very difficult to explain to her.
She had a few points during the walk were she would stop every time we done a school run without fail, I would often find myself collecting her from other peoples gardens, or if she met a stranger on the walk she would stop and stare at them and point, sometimes she wouldn’t say anything sometimes she would. If she took her scooter or buggy she would be quite happy with it every day up until an exact point on the road, if she passed it she would go back to that point to tell you she no longer wanted to ride the scooter or push the dolly buggy. She had no danger awareness and would happily stop in the middle of the road to check on her dolly or untie her shoe, she would be indecisive as well and get half way across a road them decide to run back to the other side.
If I tried to hold L hand she would start bysaying I was hurting her even though I would be gently holding it, she would progress into shouting and hitting and then would melt down in tears on the floor or other times she would run off and Iwould have to chase her.
She would often shout at me or tell me off as though she was the adult, she would also often hit me in the face, or pinch me, she also used to pinch or hit her baby sister, L would get confused sometimes and tell her mum and another time told her auntie that I had hit her but it was L that had hit me.
I could never leave her unattended with her baby sister, she would try to carry her, take things away or hit her.
throughout the day She wouldn’t play with toys, she would either follow me around or she would sometimes ask to "make a party" to L this meant spreading water sometimes with a paint brush other times with her hands and feet on the patio.
L had a few habits that would continue through out the day such as constantly sniffing, licking her lips, washing her hands, making scratchy noises with her throat and one in particular was constantly changing her clothing,
She would wet herself sometimes several times in one day even though i would ask her at least every half hour if she needed the toilet to remind her but she would always say no and rarely let you take her to the toilet resulting in her wetting herself. If L had her bowls open she wouldn’t let me help her wipe her bottom she would only sometimes let her mum but she didn’t seem to be able to do it herself, sometimes L would smear it on the wall, sink or toilet seat, most of the time she would come and tell you what she had done but other times she wouldn’t.
When taking L to pre-school we would have the same ordeal as the morning school run with the changing of clothing and different shoes, wanting to take a scooter or buggy then abandoning it half way, once at pre-school L would play along side her friends but wouldn’t interact with them. If they were all doing something she would copy or mimic them, I can remember at one occasion some children were discussing a birthday party and someone said to her "you cant come to my party L"
L didn’t understand that he had been mean to her and laughed and said it back, other children began to say the same to her but she continued to play along side them and although she looked awkward as though she knew something wasn’t right she didn’t seem to realise what had happened.
She would constantly tell me I wasn’t coming to her party if I told her off or didn’t do something she asked me to do and it seemed to stick with her.
She could also be confused, sometimes she would give me a big hug and a kiss and tell me "you can come to my party now jade" and leave it there, other times she would then change her mind mid sentence and tell me that she didn’t love me and Iwasn’t allowed to the party and would pinch or hit. I don’t think L fully understands most of what she is saying or what is being said to her as she seems to answer questions with something you may have said to her or that she has heard at school.
Over all L is a lovely little girl and can be very loving but also appears confused about how to act in situations or with people, she then doesn’t understand why she is being told of and will mimic you and tell you off.
She is very demanding and likes to be in control of the situation at all times and do things in a routine manner.
I wanted to share that with you because I wanted you to see it from another persons point of view. I asked Jade to write this out for me in support of a diagnosis, I wasn’t there when she write this out and when I read it I was completely shocked, shocked that someone else knew my child as well as me, and had noticed all these “little” things that I was supposed to be imagining. I haven’t read this for a while and it brings back so many memories. There are things in here that even I forgot about, like the constant throat clearing. Or the sniffing.They were all things that Lola was obsessive about, she done it day in and day out and when she’s anxious she licks her lips constantly causing her mouth to go red raw and sore.
Tonight was a long one so I’m going to leave it there for now.
To be continued ...........
Before we get to the bit where Lolly got to see someone for her hyper mobility, we have 9 months to get through. And This chapter is going to be about all three of my little beauty's as it's actually a key year. Moo ma (my youngest) was a very poorly baby, always ill, I think in 3 months since she was born we had called out two ambulances for her, one because of her temp and breathing, she was put on a nebuliser in the ambulance and another because she had tonsillitis so badly that she had a febrile convulsion because of the temperature rising so high. She was just like Lolly her skin would be all mottely and her hands feet and mouth would be blue, even her tongue, in fact she was worse than Lolly but again I was used to this and so it didn't worry me too much, there would be no warning for any of her illnesses one minute she's fine and the next she was convulsing with a temp of 43c. I was so scared, and just like the time with Lolly chocking I couldn't cope with seeing my baby passed out, I was so upset and I knew I wasn't doing any good with her in my arms so I passed her to Kenny, who brought her round. While I spoke to the 999 operator and packed her hospital bag. It's weird isn't it because if it was any other child but my own I would have been calm as anything and dealt with it.This was number 2 on my most scariest moments list After Lolly choking! (There have since been many more) I was distraught. Shaking, pale. She was only tiny! What was happening to my children why could their tiny bodies not cope with a cold, or anything. S (eldest boy) was a very healthy baby nothing more than a common cold. I didn't know any other family who was in and out of hospital with their children as much as me at that point. I felt like I lived there. Lolly was so upset, she didn't understand, she thought that I wasn't going to bring Moo ma back home and I just had to leave her knowing she was so confused and upset. But my baby needed me, I had to leave her. Tonsillitis was diagnosed and we were discharged. It wasn't long before we were back down there, she had bronchiolitis , and whooping cough. She was practically foaming at her mouth, it was very watery, her skin was pale, and dry and She was very verypoorly. Was given some strong antibiotics and sent home. She picked up immediately on these and was happy and healthy again. Not for long, though.
It was Christmas soon of 2012 and we had booked a lodge in wales to spend Christmas, much to the dismay of our family, but we needed a break, we needed to get away without the worry of anyone else or the big get togethers over the festive period. These were particularly hard for us as a family. Lolly didn't understand at all about birthdays and other special occasions. If you said happy birthday to her she would repeat it back love her, and still does. She gets particularly anxious, lots of unstructured days, lots of visitors, bringing presents and having dinner it confuses her. So we decided to go away, a nice lodge with a hot tub in Wales. One whole week of relaxation and hopefully some snow!
It took us 8 hours to get there!! She was an absolute nightmare, she was screaming, setting the others off, Moo was only little and needed changing and feeding often. Lolly hated the car seat, hated the music, hated everything. It was the worst journey in the world. In the end I had to pull over and swap her into Kenny's van. She was not a happy girl, not even the promise of the hot tub when we got there could persuade her to calm down. We were soon learning that journeys with Her were practically impossible. We weren't prepared, we didn't know about distractions for her disabilities because at that time she was just an "extreme version of normal" we weren't given any strategies to help her or us, we just had to deal with it, get on with it, punish her, make consequences for her behaviour, do her a reward chart!!! And wait for a parenting course to help me be a good parent!! Eventually we arrived and unpacked. After I broke down in the middle of nowhere with a screaming hungry baby, and a screaming anxious toddler! It was amazing, kids jumped straight in the hot tub, and we chilled with a well needed glass of wine and prepared for Christmas.
Moo was poorly again, she had a cough and cold and high temperature. She also came up in a rash! It was blanching though so it wasn't a worry. She got over it quite quickly this time thank god!
It rained the whole time we were there, we literally had to stay in and make do. Christmas was quiet and peaceful and very relaxed.
Lolly didn't understand climate change Or couldn't feel certain temperatures she would want to wear shorts in the winter if it was sunny and try and go out with big coats on in summer if it was cloudy, It was a bit of a worry because once she had her mind set on an outfit, she would be adamant she was wearing it, and I swear nothing could change her mind. We did though in them days, we made her change clothes but the repercussions weren't worth it, and our motto now is "if it isn't harming her what's the point" if we went on holidays in winter to the coast she would want to go swimming and could Not understand she wasn't allowed in the sea. It was almost like she was saying why are you bringing me to the sea of it's too cold for me to swim in? Logical really for a child, but "normal" children would understand after it being explained. No amount of explaining it to her would help her understand and so we would just let her find out herself.
It took us 2 1/2 hours to get home, big difference from 8 hours on the way there. It was good to be back. But then the realisation of back to work and back to school hit. I was also due to go back to work and needed childcare, so we hired a nanny, she came a worked three days a week, taking the kids to school, and picking them up. And looking after Moo at home. She would do the general tidying up. Lolly was very difficult for her. Our routine was hard because She done odd pre school days so it was quite hard to get her used to. She never listened to the nanny and was just generally difficult. At this point S had started regressing, academically he got left behind. He was in year 1. He was fidgety, inattentive, and disruptive. He was the same at home. We said before they were like chalk and cheese, and it was getting worse. We put it down to me going to work. I hadn't worked at all since having him so maybe it was just too big a change. His teachers in his class were changing all the time which didn't help, the whole way through year 1 he and the other children were passed from pillar to post. He didn't cope well. His writing and phonics took a dive, he couldn't read, would not do any work at home at all, and eventually I stopped fighting with him about it. I refused to spend my couple of hours in the evening with him getting stressed over reading and homework so we left it.
At home he was Gaining independence and becoming disruptive and belligerent S withdrew further from me, not only did I have to spend practically 90% of time with Lolly But Connie was poorly, with all her infections, she also had severe silent reflux, she got to the point where she would see the bottle and cry! She was in agony every time she fed. I went to the doctors and got her some special milk the same as what Lolly was on after trying all the other things they ask and it still didn't work, I worked out she was also lactose intolerant so I went back and got one that was lactose free. She started feeding again, and began to be a little happier, I had to eliminate all lactose and dAiry from her diet. She had a constant rash around her mouth.
So with all of this going on, I guess he had to fend a little for himself, he learned to make his own breakfast, get ready himself in the mornings and just sit there watching tv whilst I ran around like a headless chicken. I was still shouting, I didn't know what else to do. At this point it was a habit. I found it hard to lower my voice and be reasonable I was majorly stressed out. I had turned into that person who threatened to "call daddy" when the children were being naughty haha, I hate that! I always said id never do that, what's that proving? It's just proving to them that you know they don't respect you or listen to what you say. He used to listen once but not no more. I felt like he hated me, I desperately wanted I bring him back to me but I didn't know where to start! How do I do this? Where the hell am I going to find the time to make a child love me? Well I tried, and I tried and I tried to be a good mummy, to listen to him, show him attention but I just didn't have any patience or time or motivation! I was in catch 22, again every time I went to bed I swore I would be a better parent the next day, then I would spend all night up with Lola screaming for what I thought and was told was nothing or night terrors and when It was time to get up I was exhausted, and had to get Lola dressed, which took over half an hour, and the brush her teeth which took another half an hour, with lots of screaming and growling and lashing out. So again I had no time for Stan.
When S wanted to play with Lolly she just annoyed him and made him moan or hurt her, when she wanted to play with him he ignored her or wound her up. At this point they were
Both struggling for control. Not one of them wanted to give in! S was so stubborn to the point of even choosing to play on his own instead of with her. He would walk away find something to do on his own. It was a major problem. If he couldn't be in control then you couldn't play his games, it had to be his games, no one else was allowed to make something up or have any ideas. I was going out of my mind! What was going on. I was once the envy of other people. My children were so well behaved, when Lolly was a baby and S a toddler they were great I could go anywhere. I had visitors all the time. Not any more they were constant hard work. Will it ever get better? I certainly hoped so! PAH!
I missed out some details from the last chapter. So you will prob find I go back in time sometimes. Lolly was a naked child, she hated being dressed. I didn't realise why, but I knew she loved to be naked and free. Everyone used to tell me to put her clothes back on but there was no point. She would just take them off again. She wouldn't entertain the idea of a pretty dress, it was more boyish clothes she liked, tracksuits are her fave or Pj's.
She changed her clothes about 20 times a day! Was always upstairs getting a new outfit! It was damn frustrating, her drawers were always a mess I was washing her clothes all the time. I had so much washing, it was unbelievable. Eventually we found what worked and what didn't and she learned to choose her clothes herself. We have a drawer full of stuff she will not wear and a few outfits she would wear until she was 26 unless I hid them, or "accidentally" ripped them up so she couldn't wear them! She has been in the same school trousers since year R they were getting to the point where they were digging into her sides and ankle swingers are an understatement. End of term I threw them all in the bin so she now has to wear the "new" ones I brought a year ago!
She will not wear tights, or leggings, (unless for bed) no idea why that matters. She likes jeans or tracksuit bottoms or jean shorts. I have only got her Into a dress on special occasions but I still take that spare comfortable outfit I know she will want to change Into once she's had enough.
She was naked for a reason and that's because she hates the feel of clothes on her skin, the tags at her neck used to cause her massive rashes she was that sensitive. Certain materials hurt her. Imagine someone brought you that beautiful soft looking fluffy jumper for Christmas and you tried it on and it was scratching your skin so much you couldn't wear it! Most clothes feel like this to Lola and so I just have to trust her and let her wear what she wants. I didn’t always feel like this, it took me a long time to get to the point where I can get over the frustration that her symptoms, traits cause me. I used to get so angered at the amount of clothes she was getting through, or the fact I couldn’t dress her how I wanted or that she was so independent.I don't care anymore if she looks like a tom boy in a tracksuit and her hair is all messy because she's sensitive to the brush, or her face is unclean because she hates being wiped. She's comfortable and happy so leave her be I say! I don't fret. I don't care what people think, if she's happy, were all happy. She learned to be Independent from a very early age, she was washing her own hair shampoo and conditioner, she was dressing herself, she was choosing her own clothes, she was wiping her own face, and choosing her own clothes, by age 2 easily. I do have those odd moments where I feel sad about the path we have to take, but those moments are few and don't really last for long to be honest. She's such a courageous little girl and I admire her so much. She is strong, and confident, and I love her with all my heart!
Lolly doesn't know her own strength, she's very heavy handed. We got a kitten, and She used to pick him up and carry it under her arm like a baby she never left it alone. It now hates her. Anyone ever remember that story of Lenny and George? That's My baby! The same with others too she pushes too hard, squeezes too tight, if she's in the bath with you and she's washing your back she's use her nails but she will get harder and harder, she loves this type of feedback that the sensation of scratching is giving her.
Soooo we had a new baby. S was besotted although a few nights in I heard him get up and slam his bedroom door haha. Lolly just thought she was a dolly and that she could pick her up when ever she wanted to, I had to step up my vigilance now. I could not leave Baby alone for a second. I either had to make sure I took Lolly with me wherever I was going or that I took Babyx Even to the toilet, I had to take Lolly with me. I couldn’t even pee in peace, all day every day one of them was by my side.
Lolly was going into pre school, S into year 1. They went back to school two days after I gave birth and I was really poorly with a womb infection and mastitis, so was pretty much laid up not doing much, Kenny took them both and I was gutted to be missing Lolly on her first day. Turns out she was fine, she ran off quite happily. It was after about a week, she realized it was long term and she screamed and screamed, she didn't understand why we were leaving her. I know they don't really understand at that age anyway, but Her world was different, she was entering the unknown, people didn't understand her and we did, it scared her. She didn’t feel safe and her behavior deteriorated. Her communication was limited, but because she was so young everyone just put it down to her age and that she was still a baby. The pre-school noted a few things that was of concern, and that was that when she hurt herself she wouldn’t talk to anyone, she completely withdrew into herself and became mute. It worried people, a lot especially if she had bumped her head. You were a very special person if Lolly felt safe enough to reveal her true feelings to you when she was hurt. They also noted that she didn’t play and her attention span was only 1 minute. They couldn’t get her to engage, she would only do things on her own terms and she would constantly flit from one thing to another and never settle. Lolly loved to sing, it was her favorite thing to do. In fact she sang better than she could hold a conversation. If she spoke she used one-word answers. She was constantly disruptive and used to snatch a lot off of the other children and draw all over their work. For a Christmas present the the school staff brought her a book called “the naughty sheep” how ironic. I always wondered if this was a dig. But then I just think I’m being paranoid. 😉
Her appointment came around quickly, We arrived in time and sat in the waiting room, She went into the little play room and closed the little gate behind her, it had a little lock on it and she just stood there opening it and closing it back up. We were called in and the paediatrician took an extensive history of Her and our family background. Moo ma, was very poorly she was 10-11 weeks old and she had a chest infection. I mentioned this to her and her comment to me was “well you should give up smoking then” I was mortified. She spoke to me Like I had endangered my baby on purpose and that I smoked 20 fags inside the house! I was still reeling when we came out of the appointment. She noted all of Her history and they done some games and gave Her a medical examination.
Here are a few things I forgot to mention before that I just read in the report.
1. Lolly Loved bath time.
2. When I was pregnant I couldn’t take her to the toilet all the time so I had to start counting for her and this became a habit for Her and in the end she wouldn’t go upstairs without me counting for her.
3. She was addicted to undoing and doing up buckles, on high chair and buggy etc, then zips and poppers.
4. She didn’t like peek a boo as a baby, but at three years she enjoyed it like she was a baby.
5. She used to talk to you looking up at the ceiling, like the Black sheep video.
6. Lolly. used to wake up singing. ( beautiful)
7. She would walk on her tip toes.
8. She used to lay on the floor and push cars to and fro whilst watching the wheels move.
9. She still used to choke at this age whilst eating dinner.
10. She used to eat or lick everything and anything. She used to eat non food items.
So at this time, her Speech and language skills were assessed and were found to be age appropriate, She demonstrated nice joint referencing, pointing and a variety of intonation and facial expressions and gestures. She “attended very well to the toys” She was chatty and played with dad.
I told her that She woke up screaming every single night and seemed to be in absolute agony. She told me the it was without a doubt night terrors. I knew it wasn’t, id been there and done that with S, I knew what night terrors looked like, Children looked frightened, scared. Not in agony, sweating. couldn’tcommunicate what was wrong but was most definitely awake whilst she was crying. I only found out that she had hypermobility when I received her report. Why hadn’t she told me? In her report it says“she is however very hypermobile at the knees, ankles, fingers, hands and hips.” Did I not need to know this? I could have had questions about it. I did have questions about it. Many in fact, but I never got the chance to ask them because later on in her report it goes on to say
“WE have agreed the following plan”
1. Find a parenting programme for the parents to attend.
2. I have discharged her from regular paediatric follow up.
WE did not agree any such thing, in fact discharging us was news to me. So I had no choice, I had to google. I googled Hypermobility and found that her night time waking was probably due to her pain. So I went back to the doctor and complained about being discharged and he got in contact with her, she took it to a panel of people who decided based on her findings that She did not need to be reviewed. These people haven’t even met Her, None of them had even met me. What gave them the right to decide that her symptoms weren’t severe enough to warrant a review. She did get a review in the end, I Complained so much that they referred her to the consultant.
It also says she has excellent social communication skills, and that she is just an extreme version of normal. HUH what the hell does this even mean.Apparently she does have some tiny little traits but these will either become more prominent as time goes on or disappear completely.
So it was all my fault, I had a naughty child, I was imagining that she had something neurologically wrong with her. I needed to go on a parenting course to learn how to handle my three year old. They were forgetting I already had another child who had no behavior issues at all and I had brought him up perfectly. (well at that point)
I was so upset. I cried on the way home. I was angry, distraught, She had embarrassed me, made me feel really really small. I thought that was the end of it. We just had to carry on and deal with it. No one believed me. Ill just go on a parenting course and learn some discipline strategies. Yeah right!!! That was never ever going to happen.
I was deflated at this point. I left it. I thought ok ill give this a go. Ill see if I can turn her behavior around using neuro-typical behavior strategies. Ill jump through their hoops. Turns out the consultant we were referred to for her hypermobility was an absolute legend!!!!!
To be continued.......
So the Health visiting team had seen enough and had referred us. She left us with some good advice (sarcastic voice)
1- To take away her dummy
2- Visit some toy libraries to get Her playing and interested in toys.
That was going to solve our problems wasn’t it. This was just before summer term ended. She was due to go to Pre – school and S was in year R. Isn’t it sad that I can’t remember this year for him, how awful does that make me? Deep down I know and understand it wasn’t my fault directly but on the surface I’m completely gutted. I can remember picking him up and dropping him off. But that memory is only because I remember how difficult Lolly was. It was summertime and hot and we used to walk to school. She was nearly three and very challenging, I was 8 months pregnant and very fat. Needless to say she rang rings around me. I always took the buggy with me on the way to school and at the time I had no idea why I done that considering there’s no way she would have even entertained getting in it. I think I thought it was for me to just prop myself up on, but actually she wouldn’t hold my hand ever, and she loved playing mummy, and pushing the buggy so this was why. We had to walk exactly the same way, which I learned quite quickly. We live a 3 minute walk to school and there are numerous little ways we can take. I used to just walk whichever way took my fancy. But no she had to lead the way. Every day it was the same, but that took us through the park and going through the park inevitably lead to distractions, she had to go down the slide at least twice before she would walk on. She would bolt in any direction and I had to be one step ahead of her all of the time so that I had a head start. I mean she was fast, and her decision to run was literally within an instant. That’s why I had to be quick because there were roads everywhere and she has no danger sense. Imagine your child running away from you, and into roads, or into crowds and getting lost? Remember I was 8 months pregnant in the height of summer and I was exhausted from everything. All I wanted to do was get to the school and pick My boy up, but a three minute walk took us 20 minutes every single day. The melt downs from having to hold my hand across roads, One time I was trying to put her in my car and she bolted straight across a busy road, I was so scared. Luckily there was nothing coming because it was the opposite side of the school and so a 30mph limit. I couldn’t get to her quick enough, my heart was I my mouth and I was so angry with her. I had just literally told her not to go into the road,
She done this a lot, when I told her not to do something, she would automatically do it, It was like her brain was wired up wrong,
She was very particular this little girl, I had to walk directly behind her and on the lines if I moved she would make us go back and start again. All kinds of problems arose from our walk to school, when we finally got there we were met with masses of parents and children in the playground and she would be everywhere, I had to follow her all around. Because she was so unpredictable I couldn’t just leave her to wander whilst watching her. She would seek mummies and their prams out and just put her hands all over new-born babies, or take their dummies out and yes suck them! She would bolt out the gate given half the chance or run into classrooms disrupting them. So I did the best I could by supervising her and not restricting her so much because that’s what caused us most problems when she wasn’t allowed somewhere or to do something she would completely breakdown. Spoiled? Naughty? Nope she had her ways and I learned how to manage them in the best way I could according to our personal circumstances. Some people used to say, she just needs discipline, or send her to her room, give her a slap. But even if I did any of these what would that be teaching her? Absolutely nothing. Not one thing would be gained from disciplining my child who was displaying these behaviors because of social and communication difficulties. I needed to teach her. But I couldn’t because I knew nothing myself. Oh I was convinced by this time it was autism but everytine it was mentioned I it dismissed as bad behavior or parenting issues. They used to look at her, walking around ordering everyone about, being rather adult like at 3 and decided that no, autism is not the answer because she doesn’t look like autism? What does autism look like?
Everybody had decided it definitely wasn’t Lolly. Close friends and family never even believed it, I struggled to convince Kenny even. which I don’t blame them for, because she is different. The only person to see in those early years was my dad. She isn’t typically autistic, if that’s even a word. Which is why she has the diagnosis Atypical Autism. She presented in a way that needed to be unpicked, unraveled. No idea why, I could see it and I wasn’t a professional.
So I learned that walking the three minute walk to school isn’t the answer and I should drive them. Drive?? For a three minute walk? I must be mad. Or lazy? Or both. But actually once we got into a rhythm of it and she got used to the new routine it worked really well. Unless I decided to make a detour to the shops, or park the other side of the school and walk down the alley, I soon found that ihad to take the same route every day, Some things she and I said to each other were said every day. At the same time for the same thing. This can get frustrating, when you are trying to get your kids to school and every thing has to be completely the same. But again I quickly learned that it easier to just do or say as asked. I had to park her next to the fence. Or she would scream. I had to take the same route. One time I went one little way different andshe went into complete meltdown. This meltdown was actually one of the most intense she had at that age. She was inconsolable. We had some words now too, mostly shut up, sh** and F**k . What do you do with your child who swears like this? I ignored it. It seemed to work because she didn’t swear for too long.
So the wait through the summer for that appointment was horrendous. The summer was long, and hot and I was stillllll pregnant! Lolly never really recognized I was pregnant, never talked about a baby at all, I don’t think she understood. We muddled through the summer, until Kenny thought it would be a good idea to ride down a big hill on a childs scooter.
Pregnant lady with a dog unleashed, a three year old runaway, a 5 year old copycat about to go down the same big hill his father just did and Kenny who had just flown 20 feet in the air and landed on his back!!!!! I did not know what to do first. I know what I wanted to do. RUN and HIDE. I did, however, do what came naturally, I legged it back to the car with the dog left Lola and Stanley with Kenny on the floor crying in pain, started the engine and made a quick getaway. Haha not really. I bundled the dog in the car whilst shouting at Stan to get the hell off of the scooter and grabbing Lola out of the road. I then went to see if Kenny was ok. Nope he was white as a ghost and in agony. I knew something bad was wrong, so we got my mum round to have the kids and I took him to A and E. Broken collar bone. One thing after another! That night I made Kenny a bed on the sofa and slept downstairs with him, well I stayed down there, there wasn’t much sleeping to be done between Kenny trying to get comfortable and Lola waking all night. I had to physically lift Kenny to help him move, wash him, bath him, dresshim for about a week. After that first night I moved the mattress downstairs so we could sleep better. It was an awful period. I have no idea how I never went into premature labour. We had our bedroom decorated ready for the baby in the midst of this too, so it wasn’t all doom and gloom.
I started getting contractions (again) two weeks before she finally made an appearance it was soul destroying. But finally we were about to start a new chapter in our lives, I had just received an appointment for Lola to see the peadiatrician on 10thDecember 2013, Moo ma was bron, initially as Mollie – Mai. And Lolly was about to start pre – school. Thank Christ. A break!
Who'd have thunk it?