The Road To Mainstream Pre School Part One

I had enrolled Lachlan in our local playgroup before his initial assessment, Lachlan was due to start in August 2013, I had spoken to staff when enrolling and explained about Lachlan still not speaking and that we were waiting on assessments, after the EYCAT assessment I had to make the call explaining that Lachlan’s problems were much bigger than we had realised, it was agreed Lachlan would start playgroup 7 months earlier than intended 2 afternoons a week in a small group of 2-3 year olds, the idea was Lachlan would have time to get to know playgroup the staff and children and for them to get to know Lachlan it was also hoped that in time learn to be away from Ian and I.

I think it fair to say that on that first afternoon in January both Lachlan and I were completely unprepared and over whelmed, I never realised how traumatic a change starting playgroup was to be for all of us. I came home that day and sobbed for hours vowing never to put either of us through that again, I never realised how hard it would be or how much it could hurt to spend an afternoon playing with other children, my older two had both gone to the same playgroup and I had always loved playing with the other children when my turn on the rota came round, this was not going to be the same, this was the first time Lachlan and I had spent time with children Lachlan’s age in over a year, there it was, suddenly clearer than ever before just how far behind Lachlan was and also how different. The other children could talk, they could eat normal food, they played with each other and they asked questions.

Thankfully our health visitor had foreseen what I hadn’t and called to help pick up the pieces, she helped to convince us to go back the next day and called regularly over the following weeks, sometimes it is not until you find yourself in a situation do you realise how complicated a situation it is or how much is being asked of you or just how much you are asking of others. It suddenly struck me how vulnerable Lachlan was, I realised I was going to have to place an enormous amount of trust and faith in the playgroup staff, I realised Lachlan was not going to be able to tell me if something was wrong, he was not going to be able to tell someone if he was hurt, or if he needed or wanted something and it terrified me, we were at this point just about getting by at home with Lachlan taking us to everything he wanted or pointing and making very determined sounding tones but in an unknown environment that wasn’t going to work.

That first afternoon Lachlan clung to me in playgroup with his hands on his ears we tried to join in but every activity we went to sparked off tears and very stressed sounding goodbyes from Lachlan. The next day was better, the next week worse, Lachlan and I found ourselves on a bit of a roller-coaster of highs and lows over the coming weeks, for every step forward there would be one back, part of the problem was we were all learning, Lachlan was learning how to be somewhere new with other children and adults, the staff were all learning about Lachlan and global developmental delay and the autistic spectrum as was I at home, it was awful due to the lacking services being asked questions about why Lachlan did things or what Lachlan needed and not really knowing the answer. Reluctantly at the end of February I asked our GP for a referral to be made to Social Work to try and make some headway in terms of support for us all. I will be honest and say at that point I strongly believed Lachlan needed to be in a specialist educational provision, he just didn’t belong in mainstream, it felt a bit like trying to fit a square peg into a round hole, no matter how hard we all worked it just wasn’t happening. Lachlan was so stressed all the time, he wouldn’t eat, either wouldn’t sleep or would sleep all the time, wouldn’t wear clothes, was banging his head all the time, I hated seeing him so distressed and miserable.

I called the education department to ask what additional support Lachlan was entitled to and to ask about how to apply for a specialist setting, as Lachlan was not yet 3 he was entitled to any support at all and Lachlan could only attend a specialist setting if referred there usually after a period of time in mainstream, I arranged for us to visit the SEN nursery 30 miles away from our home, there are only 2 in our region the other is 50 miles away, it was very impressive and everything I could have wanted for Lachlan, they had classes of only 6 children all children had 1:1 care, everything was laid out and designed with additional needs children in mind, there were sensory areas, outdoor areas, there were picture cards everywhere, it felt very right, the children there were just like Lachlan too. I went home and asked again for a placing request to be made for Lachlan we were then dealt the blow that integrated children’s services would never agree to fund a child Lachlan’s age traveling so far in escorted transport plus Lachlan’s needs were not in their eyes great enough to warrant a place. I never was happy with the idea of handing Lachlan over to strangers to get to and from nursery my intention was, had we been offered a place I would escort. It was awful feeling Lachlan didn’t belong anywhere. We had to find a way to make playgroup work.

A huge turning point came when Lachlan’s grandparents bought him a weighted vest, very quickly Lachlan became a much calmer little boy, I will never forget the afternoon he first sat still for more than a minute; Something Special had come on TV and Lachlan had stopped to look, that day for the first time he stayed and watched the whole episode, it was as if before the vest Lachlan couldn’t bear to sit or be still, suddenly Lachlan could concentrate on taking part, suddenly Lachlan and I could do puzzles and play.

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Lachlan’s Angels 2013

Lachlan’s Angels are the wonderful individuals who have seen us through our journey so far, they are his big brother and sister, grandparents and relatives who are always there, our friends who didn’t shy away, the amazing ladies at playgroup, the Speech Thearapist, Home Visiting Teacher, OT and our Health Visitor, all have gone above and beyond their duty to Lachlan, all have helped shape what is now a happy little boy, for this I owe them all everything.

In those long months of waiting an old friend would become the first angel to come into Lachlan’s life. Kirsty works with older additional needs children in a special school, Kirsty was to offer the first light on our journey through a very long and dark tunnel, Kirsty was kind enough to visit us with loads of information and visual aids, it was a wonderful first step to have someone sit down and talk to us honestly about Autism and what it really meant for a child.

I set about reading as much as I could, I won’t lie, some of what I read was harrowing, at times it was very hard to accept all I was learning about autism, the more I read the more I realised it was not a case of if Lachlan would be diagnosed with autism but when. I hoped and prayed as I still do that Lachlan would be a happy little boy, suddenly nothing else mattered we could cope with anything autism was to throw at us just as long as Lachlan was happy, I knew we would find away.

In February 2013 we met Lachlans next angel, Ellen the speech therapist, Ellen was impressed how far Lachlan had come since his initial assessment as Lachlan appeared to be trying to lable things he liked as parents we were convinced Lachlan wanted to talk, at first I wasn’t sure of Ellen, as she gently explained that her role was to be to get Lachlan communicating but not nessasarily with speech, it was also explained to us then that Lachlan may never speak other than echolaillia (mimicked speech), I hated the thought that one day Lachlan and I may never chat as I do with my older two, I didn’t want to be looking at other ways of communicating, I wanted Lachlan to speak, it was around this time that Lachlan learned another word which was Daddy, we had heard it before but now it was back and to stay, don’t get me wrong I was delighted but at the same time I longed to be Mummy. We set about making pictures of everything with an aim to using a PECS (picture exchange communication system) so far this is still hit or miss for Lachlan as he can exchange the card for crisps and juice he chooses not to though!!! Ellen tried in one session to give Lachlan the choice of two cards one for Twinkle Twinkle the other bubbles, Lachlan ignored Ellen or so we thought Ellen made the choice and started singing next thing not only did Lachlan hand Ellen the bubbles card he shouted the word from the souls of his feet!! Ellen has the patience of a saint and really does care, she has always said she can see a lot of potential in our wee man, I have always tried to believe it, now I know he has.

In March Lachlan started having fortnightly visits from the Home Visiting Teacher Susan, Susan is amazing, Lachlan warmed to her very quickly, the advice and support we have received from Susan have been invaluable, Lachlan has come on so much thanks to Susan’s visits, it was during these visits we realised Lachlan can count easily to ten, I had to bite my lip to stop the tears the day I realised the sounds Lachlan was making were an attempt at saying numbers as he counted the little cars, now he counts a lot, we also learned that Lachlan knows most colours, Susan was laying out coloured matts on the floor saying the colours as she went, red, green, blue and then a very little voice beat Susan to it the next mat was yellow Lachlan told us, Lachlan likes to randomly point at things and tell me their colour, he can when asked in play give me the right coloured car or ball or take the right one from me. Lachlan now likes to point out letters in logos, he knows the letters C, B, A and S, Susan has also been a great source of ideas and suggestions to engage Lachlan in play, as well as offering advice to playgroup and fighting our corner at meetings and helping me to see the broader picture when something’s have not gone to plan.

It is wonderful to be sitting here tonight knowing Lachlan is a happy little chap, he has moved mountains since this time last year and it is down to the wonderful individuals mentioned above, I feel certain Lachlan will continue to surprise us all in the years to come, I hope as and when they are needed many more angels find there way into his life.

written October 2013

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Finding A New Way……

Knowing we were on our own and would be for months was actually frightening, things for Lachlan and us all were bad, I was terrified how much worse things would become if we just sat about waiting, having a definite diagnoses of Global Developmental Delay and knowing it was highly probable a diagnoses of Autistic Spectrum Disorder was going to follow in time, I set about trying to make life for Lachlan and in turn us all at least a little better.

I watched Lachlan for a day or two, of course I hade been watching him all his little life but this was watching with newly opened eyes, I made notes in my head about everything that seemed to set off a negative reaction.

The only thing Lachlan liked to play with was our PC as a baby he had been fascinated with it, at around 14 months of age we discovered Lachlan knew how the PC worked, from 18 months he could from the desktop screen, open google, clear the web bar, type in the letter B bring up the BBC homepage and from there either watch what he wanted on the iPlayer or play games on CBeebies, or have two windows open so he could do both at once, now at 3 he has broken the PC and fixed it many times, bought loads on Amazon interestingly usually toys or DVDs from the shows he liked, Lachlan loves to explore the worldwide web. I did then and do now allow him some freedom to explore.

The first and perhaps most obvious problem was Lachlan didn’t play, on the advice of professionals most of Lachlan’s toys and lots of buttons, sound and lights, these toys were not right, Lachlan was either frightened of the light and noise they made ( sensory overload) causing ear covering and head banging or would spend hours pushing the same button over and over again, on, off, on, off never doing anything more with the toy, another suddenly huge apparent issue was all Lachlan’s toys were age appropriate all were for 2-3 years plus, it struck me in the middle of a sleepless night that if a child has Global Developmental Delay normal rules are out, I packed away nearly all Lachlan’s toys and went shopping. I bought an Elefun which has balls pop out its trunk meant for 9-18 month old toddlers, a click clack track where the cars slide and drop from top to bottom, wooden shape sorters and a few wooden peg puzzles, no lights, very little sound and only one button in all the toys put together.

I will never forget the smile and happy sounds that first afternoon we set up Elefun, to begin with Lachlan watched from a distance hands covering his ears and just watching from the corner of his eye, with in half an hour with gentle encouragement he was chasing coloured balls round the room and bringing them back for more. We quickly learnt Lachlan liked shapes and shape sorter toys I also realised Lachlan was cleverer than he was being given credit for……

It was November I had bought my Christmas present, an IPad, I set it up, within minutes Lachlan has it sussed and was off to CBeebies, the IPad being touch screen I believe developed the first skill needed on the long road to speech a skill Lachlan was still missing at two and a half, to make the IPad work Lachlan had to use a single finger to point!
Lachlan quickly got the hang of pointing miraculously he cleverly realised that pointing on the IPad got him what he wanted, pointing for biscuits, food, drink all followed very quickly, suddenly we had at last opened very early lines of communication, If Lachlan was upset or distressed I started to ask him to show me what he wanted, it was hit or miss and still is in many ways, it was a massive corner turned.

I had already bought Lachlans Christmas presents, everyone bought over the year with lots of thought and hope of a smile on giving them to Lachlan. I had to accept based on the success we were having with the new simpler toys, what I had stashed away was inappropriate, the little balance bike is all I have kept in the hope one day Lachlan might master it, all the rest I sold months down the line when it sank in it could be years before Lachlan is ready for them. Some thought I was mad, perhaps I was a little, I couldnt believe the diffrence in my wee lad in a few short weeks, the decision was made Lachlan got his very own IPad for Christmas, we have set rules as to when Lachlan can have his IPad by no means does he have it all day, I saw and still do see the IPad as a way into Lachlans world a world I sometimes am allowed into.

Everyday I would spend an hour or so purposefuly playing with Lachlan and a chosen toy or toys trying to develop new skills and strengthen imerging ones, no one showed us how it just felt the right thing to do.

I decided to pick our battles, we stopped the pointless battle for solid food for the time being, let Lachlan sleep in our room, shoes and socks were not nessasary in the buggy with the cosy toes on, tooth brushing stopped as did hair washing, clothes were only essential if going out, all these things were a sensory nightmare for Lachlan, we just took time to breathe.

We kept taking Lachlan shopping, for days out, to visit friends and family, partly because he didn’t seem to mind also because the rest of us needed some normality.

By Christmas 2012, 6 weeks post assesment we had a more settled happier little man. The only help and advice we had came from a very good friend to you I owe everything.

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Waiting…….

Lachlans early years assesment was at the end of November 2012, I was led to understand that referrals would be made to the Speech Thearapist, Occupational Thearapist, Home Visiting Teacher, Borders Autism Team and Disability Nurse and that we would start appointments with these specialists in a matter of a few weeks. A report from the assesment was also to follow. I felt relieved that at last help was meant to be forthcoming.

That relief soon turned to anger and frustration, appart from our health visitor and my older children’s school link worker we were left with no support, it was so soul destroying to watch my wee lad suffer, clueless how to make it better knowing others did, having to live with the questions from family and friends unable to answer them, having questions of our own and no one to ask them of, there were days I nearly ran away, I had it all planned in my head where I was going and how to get there, I couldn’t do it, couldn’t do that to Ian and the kids whom I love so much. I made phone calls chasing appointments always to be told there were waiting lists, I cried for hours after one call where I was told we would be unlikely to be given any appointments before February that was four months away!!! I begged our GP and health visitor for advice, the common reply was “this is where you need specialist help”

Harder still to bear was the amount of times we were given appointments which raised our hopes that help was coming only to receive a phone call sometimes at less than an hour before we expected the specialist to arrive to say they were not coming, knowing that it unlikely we would be offered another appointment any sooner than 6 weeks down the line often plunged me into free fall, we even had one specialist come out do an assessment arrange to return with a report a month later only for her to leave her post, never to return and no report written.

I called the education department to flag up Lachlan as he was due to start playgroup in January and I wanted to make sure support would be provided, or if more appropriate a place in a specialist setting, I was saddened to learn that as Lachlan would not be 3 until June there was nothing in terms of support we could be offered.

I spoke to several so called national charities, none of which offer any services or support in our region, I thought that madness you can call yourself Capability Scotland, National Autistic Society or Autism Scotland, yet be under no obligation to offer services in all areas, being in a rural town there was nothing by means of support or information providing. Mindroom were the only ones to try and help us.

Finally after just about surviving Christmas we had an appointment to receive the assessment report, I must have still been too numb because although I read the report then and several more times in the following days it wasn’t until reading it 5 months down the line did I realy take it all in, we waited another 2 months for speech therapy and home visiting teacher to begin, 9 months for Lachlans Autism assesment and a full 11 months for a full OT assessment. We are still waiting on a genetics appointment and blood investigations. We have been without a paediatrician for 11 months as the locum covering the maternity leave of our own paediatrician didn’t have a clue when he saw Lachlan in February,he hadn’t even read Lachlan’s notes, we went with a list of questions as this was our first contact with paediatrics since October, every question was answered with “I am sorry, I don’t know the answer or I can’t make referrals out of house” We were asking for help to chase the promised services and if they were not available locally then could we be referred somewhere that we could access them. It took two letters from our MSP to get the services Lachlan so desperately needed it shouldn’t be this way, I have no doubt in my mind we would still be sitting waiting on some services had I not fought for them, I kept pointing out that we were not simply numbers, that in the middle off all the mess was a beautiful, sad and lonely little boy who deserved far better than he was being offered. I didn’t want to here or care about budgets or staff shortages, there always seems to be money for drug addicts and drunks in need of treatment yet my innocent little boy who has never hurt anyone had to wait. I just wanted to make life a better place for Lachlan.

Lachlan age 1-2 years, Learning I was right wishing I was wrong

I felt we were on the up, we had survived Lachlan’s first year, surely at last as a family we would find some kind of normality and routine?

If only it were that easy, the struggles continued I now know that in all areas of development with the exception of gross motor skills Lachlan was struggling and lagging behind back then I just saw it as a lot of quirks to battle on with.

Lachlan was stuck on smooth puréed food we managed to reintroduce soya but every time we tried to introduce lumps Lachlan would retch and throw up, then go days without eating even the food he was used too, touching finger foods and new strong smells provoked the same reaction, as a baby Lachlan hardly put anything in his mouth, he seemed at a loss as what to do with finger foods. Lachlan slipped back into the pattern of endless infections and illness some requiring hospital treatment, we were advised by GP, Health Visitor, Dietician and Paediatrician to cut down Lachlan’s milk and fluid intake to encourage him to eat and I was meant to be reassured that in theory Lachlan wouldn’t starve himself. We were invited in amongst it all for more vaccinations, one being the MMR this was partly because Lachlan was never well enough and partly because no one could assure me he would not have a similar reaction to the baby ones, we felt it too much to put Lachlan through, my gut instinct screamed no more for now.

Lachlan walked at 18 months and was so very proud of his wee self, how he beamed from ear to ear, now I know that all toddlers wobble but Lachlan was dangerously unstable on his feet and shoes made it worse as when wearing shoes he would high step which looked very bizarre, there were many falls, hills and uneven surfaces even now are tricky for Lachlan and stairs a complete disaster, again we were told it was just Lachlan finding his way.

We moved house when Lachlan was around 18 months and he hated our new home, it was then that I really started to fight the professionals caring for my son for answers, the poor wee mite screamed for days, spent hours pacing back in forth in the hall, when not pacing Lachlan would be found standing on his head usually watching TV, hated his toys, he slept even worse than usual, refused food more than ever, seemed terrified of everyone and everything new, then came the throwing himself to the floor and hammering his head off the floor, over and over for increasingly longer periods of time he had a permanent bruise on his forehead, speech was still limited to Goodbye which was repeated in a heartbreakingly sad little voice from getting up in the morning until bedtime. The only time Lachlan was happy during those awful days was when he had my PC to play with, he was amazing with it even at 18 months, but that story is for another day.

We felt so alone, no one seemed to know what to do to help, I couldn’t leave Lachlan with anyone so we never got a break poor Hamish and Alex had to put up with so much yet never complained, even the grandparents were screamed at.

In time Lachlan settled in the new house to a point, he slowly screamed less the other behaviours reminded for a long time to come. We started to have better days again.

We persevered with the suggestion of less milk and fluids, Lachlan was loosing weight, he did in time take thicker and slightly lumpy food but would only eat a tiny amount, I actually hate the photos from Lachlan’s second Birthday as he was so painfully thin, in the bath he looked like a bag of bones, his tummy was so upset all the time he had constant smelly diarrhoea, we saw the paediatrician just before Lachlan’s 2nd Birthday, it was suggested we take soya back out and reintroduce as much prescription milk as Lachlan wanted, although initially fine with soya it was a delayed reaction, 2 weeks on antihistamines and as much milk as he could put away Lachlan was a much happier little boy. It was at this appointment it was also agreed Lachlan needed further assessments. I honestly think the paediatrician knew that day in June 2012 a year before Lachlan finally had his Autism assessment that Lachlan was Autistic. I still thought he just had speech problems and was a little behind. This was the first real admission we had from anyone that things were not as they should be. I hoped, prayed and wished the impending assesment would show nothing to worry about or nothing that couldn’t be fixed, I still had the uneasy nagging feeling I had had since pregnancy, I didn’t want to be right.

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Learning to walk

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18 months

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On Lachlan’s second Birthday

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With big brother Hamish and sister Alex

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Lachlan 6-12 months

I felt we turned a corner in the months following that awful first Christmas, Lachlan was a truly happy little man, full of fun and laughter, at last he was gaining weight well and was enjoying food, he loved to be played with, loved the PC, and slowly started to catch up developmentally, at eight months Lachlan mastered sitting, at nine months strangely came supported headstands, at ten months leaning whilst standing and he was crawling by twelve months.

Lachlan still didn’t like people visiting and he hated being spoken to when out in the pram, even people he knew would cause a screaming fit. Sleep was still a huge disaster, Lachlan still wouldn’t sleep through, he would happily fall asleep in our arms but the second you put him in his cot he was straight back up and often for hours at a time.

These months were a very happy settled time for us all, we enjoyed our first family break away, Lachlan was blooming, I started to relax a little thinking perhaps I was being paranoid and overprotective though I still had that nagging doubt which I just couldn’t shrug off.

We had a small family party to celebrate Lachlan’s first Birthday.

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6 months
Feeding time

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8 months
Playtime

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10 months
On holiday

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First Birthday

Lachlan’s First Christmas

Finally at aged 6 months life seemed to be improving for us all, Lachlan was so much happier, he loved playing with us all and was turning into quite a character, his big brother and sister were worshiped by him. Lachlans favourite time of day was when they came home from school.
I remember so well us all looking forwards to our first Christmas as a family of five, I had spent hours choosing presents, I bought Lachlan the cutest knitted dungarees in red, the baby’s first Christmas bibs, we were all very excited.
On the 22nd of December Lachlan was not himself, he screamed and screamed, then became very listless, his temperature was sky high and his fontanel at the top his head was bulging constantly, I knew the these were very worrying symptoms, our GP sent us straight to our local hospital, I have never been so frightened, the staff were wonderful, tests were sent off, I held my beautiful boys hands and spoke to him whilst he underwent a lumber puncture, it was all I could do, I was not going to leave him to suffer alone, it was awful seeing him so helpless. Antibiotics were started immediately and Lachlan was given fluids and oxygen, initial tests were inconclusive, he was very wheezy and had a blotchy rash, I was convinced it was meningitis we were very relieved when meningitis was quickly ruled out, although Lachlan was still very poorly.

We stayed in hospital for two nights and on Christmas Eve with Lachlan on the mend we went home to spend Christmas morning as a family, we had to be back at the hospital late morning on Christmas Day and daily for the next week for continuing IV antibiotics, It was the kindest gesture from the paediatrician who knew how awful Lachlans early months had been for us all.

Christmas still did not go at all to plan, Alex came down with a scarily high temperature and even now has no recollection of Christmas 2010, she found toys days later but had no idea they were her presents, we took her in with us to the hospital when we went for Lachlan’s IV antibiotics, she was started on oral antibiotics and allowed home, on Hogmanay December the 31st we received a call late on in the day to inform us both Lachlan and Alex had tested positive for the H1N1 (swine flu) virus, Alex had been vacvinated, we had no idea how, we were stunned, we were the first confirmed cases in our town, we may have been the only confirmed cases.
2009 was the year of the deadly outbreak with it surfacing again in 2010, I am so greatful to the doctors who started both my babies on antibiotics without hesitation, I have no doubt it could have been much worse for both children without; I strongly believe the antibiotics prevented what would have been devastating consequences of complicated secondary infections.

It took both children months to recover fully, both caught every bug going and every time both were floored.

Christmas was awful for us in 2010 but we got the best presents ever, Lachlan and Alex both in time recovered sadly there were others not as lucky.

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