Haircuts

When T1 was around 22 months old we took him for his first haircut.  It was a busy hairdressers and there was a queue.  He was restless waiting so by the time it was his turn he was quite agitated.  He started to cry and scream and we had waited so long that I instructed the male barber to just get on with it.  This meant  we had to practically hold T1 down whilst the barber sheared his hair off as quickly as possible.  This was the worst thing we could have done.  I wouldn't recommend forcing your child to have anything done if they are distressed.  Haircuts thereafter were a nightmare.  At this point we were unaware of T1 having ASD but thought that his reaction might be different to other children his age. He now seemed to have a phobia of haircuts and to add to this, he had sensory discomfort when his head was touched, especially lightly.  It seemed an impossible task but with his hair getting longer we needed to find a solution.

My solution was to buy my own set of clippers.  We bribed T1 for the first few haircuts.   He was sheared so his hair was very short but we couldn't get to the bits at the nape of his neck or round his ears to tidy them up as this was so uncomfortable for him.  He was still very uncomfortable but was at least in his own home.  We stuck with this for a couple of years and his little brother had the same haircut but actually loved having his hair cut.  A friend (who is an Occupational Therapist) suggested putting something heavy on T1's knees whilst he was having his hair cut.  This would help to centre him when he felt fiddly and offer different sensory input whilst he felt uncomfortable when doing the tickly bits round his ears.  This seemed to help and he was less distressed.  We took T2 to the hairdressers to have his hair cut and took T1 along just to watch.  T1 was now age 6.  By this time we had the ASD diagnosis and explained to the hairdresser how T1 felt uncomfortable.  This lady was brilliant and gave T1 time in the chair and some toys to play with.  Each time he accompanied T2 for a haircut he managed to have another bit done to his hair.  He still wasn't able to get his ears and neck bits tidied up but to sit in the chair was an achievement.  After a year of this and practicing at other hairdressers we felt we needed to try and get the neck and ear bits sorted out.  DP had the novel idea of getting his long hair cut short so that T1 could see him have it done and so that he could get his done next.  I was sceptical to say the least but this worked a treat and for the first time ever, at age 7, T1 sat and had a proper haircut with the tickly razor round his neck and ears and everything!  I'm ashamed to say that the journey to a successful haircut was solely led by DP.  I found it too difficult to see T1 upset in front of the queue of people at the barbers and felt that if I lost it then he would be more distressed.  I was also slightly haunted by that first experience too.  I have to admit that DP still takes T1 & 2 for their haircuts.  I must go and watch one day soon.  It'll be a proud moment.  I still wonder if that first experience meant our journey has been longer or whether it would have been like that anyway.  I learned a valuable lesson though... never to subject my son to something which caused so much distress.  It really wasn't worth it.

Primary 2

T1 entered his Primary 2 year with all of the other boys and girls in his class.  There were 15 of them in total.  They are a close knit class so it was lovely for them to be on their own as opposed to being in a composite class.  T1's P2 teacher was a really lovely lady who was due to retire after T1's P2 year.  This year at school went really well for T1.  He really achieved a lot.  Some of his achievements in this year were:

• Making closer friendships with his peers both in and out of the classroom
• Coping much better with school Sports Day
• Beginning to self regulate his emotions e.g. taking himself off for some quiet time in the book corner in class if he needed to (his teacher was very supportive of this and would encourage it as required but would also help to re-integrate T1 back into the class goings on once he had had a bit of space)
• The small class size allowed T1 to play games etc. with his peers and get some honest feedback from them which helped him modify his behaviour e.g. his friends said that he was laughing too loud so they didn't want him to play anymore.  This sounds harsh but he actually needed to hear that to think 'Mmmm perhaps I need to tone down the volume of my laughing so I can keep playing'.

After his first term in P2 we had another meeting with the Educational Psychologist, his class teacher and the Head Teacher.  The feedback was that T1 was doing really well and was making closer friendships.  They knew this because he joined in with others more in class and spent time playing with others in the playground.  His handwriting was improving and he was doing well at concentrating on his work when he knew what was going to come next.  At the end of this meeting we all decided that T1 didn't need formal Educational Psychology input anymore as there did not appear to be any issues in school that couldn't be worked out between DP and I and school staff. 

Also during this year, T1's friends expressed an interest in learning about ASD as T1 was beginning to say that that is why he finds some things difficult and why he is good at remembering things that he is interested in.  I got a hold of some books that I let others borrow for their children to read if they wanted to know more.  Particular favourites are:'Friends Learn About Tobin' and 'Tobin Learns To Make Friends', both by Diane Murrell.  I think these books are pitched well for ages 4-6.

At the end of his P2 year, T1 let me know that he didn't want to use his pencil grip anymore.  I could have insisted but I believe that it's his choice unless I think he is going to harm himself.  He was still happy to use his sloping board for writing and his disc-o-mat.  T1 was also discharged from the Child and Family Mental Health Service where he recieved his diagnosis.  We didn't have any concerns/difficulties that required such a specialist service.  We knew that we could be re-referred to be seen again via our GP if T1 needed it.

All in all T1 had a very happy year in P2.  I believe a lot of this was down to being in a small class with the children he has always known and having a very caring, compassionate teacher with oodles of experience :-)  I found this quote somewhere online and it sums up how I feel about my chats with  T1's P2 teacher...

'I may forget your name but I will recall in detail the way in which you spoke to me about my child - and most of all I will remember the compassion and realism you exhibited'.

 

The Birth

What can I say besides it was difficult... one of the most difficult experiences of my life.  I feel sad saying so given that most people regard the birth of their first child as the best day of their life.  It was a very long labour ending in lots of intervention because I was very unwell.  Turns out that T1 had an infection too.  My waters broke on a Tuesday night and T1 was born mid morning on the Friday.  Adding to that, there were several medical bits and pieces that went a bit wrong (or rather the small percentage of medical risk happened to me).  For example, I had too much spinal anaesthesia which paralysed me from my nose downwards which meant that whilst I was vomiting, I actually thought that I was going to choke and die.  I was so traumatised by this that I actually refused contact with T1 when he was born for about an hour or so.  Obviously I feel awful about this now.  I have no beautiful memories of his first cry or the first time that I looked into my baby boys eyes.  In fact, I had very little contact with T1 on his first day because I was so unwell and required lots of morphine and antibiotics.  T1 was taken to the Neonatal Unit about 12 hours after he was born.  I tried to go and see him but I haemorrhaged so had to stay in bed.  In the days that followed, I went down to the Neonatal Unit to feed him when called to do so.  I never just sat with him, spending time with him.  Was I bonding with him?  I'm not really sure.  He had to have lots of needles inserted into various parts of his body and about 5am one morning, a Doctor said 'you can stay to comfort him whilst we find a site for the cannula if you like'.  I politely declined and removed myself to sit outside whilst they did their job.  I think T1 was about 5 days old.  I remember sitting there listening to him crying.  And then something inside me clicked.  I must answer my baby boys cries and I got up and went in to be with T1.  I put my hand through the hole in the incubator and took hold of my baby boys little hand and stroked it gently.  He turned his head towards me, stopped crying and studied me with his beautiful blue eyes.  It was then and there that I became T1's mummy, there for him, no matter what. 

T1 had various tests including brains scans and lumbar punctures.  It was a difficult time.  He had various courses of antibiotics intravenously.  It has crossed my mind, very fleetingly, about what effect the medication could have had on his little brain.  Could this have made him more susceptible to having ASD?  But I know that there is no good evidence to support this idea.  I have also wondered whether a lack of a bond in the first few days of his life would have affected him having ASD.  But again, the sensible part of me knows that I did what I needed to do for survival at the time, albeit selfishly.  The main thing was that I did bond with T1 - my special blue-eyed boy :-)

Occupational Therapy Assessment

T1 had his Occupational Therapy (OT) assessment appointment a few weeks ago.  He recognised the hospital as the same place where he was told that he had Aspergers but I explained that we were there this time to see about his 'flexible joints'.  This is what T1 has chosen to call his difficulties with movement and low muscle tone.  We met a lovely OT who carried out her assessment over an hour and a half.  She did various standardised tests and then summarised by saying that T1 has hypermobility, low muscle tone and therefore will find writing, balance and other tasks very tiring.  She also recommended a few aids for us to try:

• Disc-o-mat - a rubbery, knobbly air filled cushion for T1 to sit on his chair at school or when he is sitting on the floor at school - the point of this being that it will give T1 sensory feedback as to where his body is in space without him having to wriggle about so much which will hopefully then help him to focus better on his work
• Wider handled cutlery - moulded plastic handles with finger holes so that T1's fingers don't slip off the cutlery when he is trying to grip them - he rarely uses a knife and fork just now so hopefully these will help
• Pencil grips - really knobbly ones with precise places for T1 to put his fingers with less chance of them slipping
• A writing slope (Posture Pack) - to encourage better posture when writing - at the moment, T1 is slouching over his workbook to have a close look at what he is writing because he has to put a lot of effort into it

The OT also did great work at getting key information from T1's teacher about how he is at school.  She also contacted the teacher directly following T1's assessment and informed her of her findings and how to use the recommended equipment correctly.  We now have most of the equipment that we need and it is going great.  T1 has now been discharged from the OT service.

The OT assessment really confirmed what I have known about T1's motor skills.  It was important to have the OT assessment though as he has accepted his Asperger's diagnosis without much difficulty but it is his difficulties with motor skills that affects his self-esteem because he can see so clearly that he is different from his peers.  For example, he was crying one night and when I asked what was the matter he said that he was the only person in his class who couldnt do a roly poly.  He seemed half upset and half frustrated that this was the case.  I am hoping that learning more about his 'flexibility' will help him to take ownership of it like he has the Aspergers diagnosis so that he knows that it is just another quirk of who he is.

To Label or Not...

Deciding on whether or not to have your child officially diagnosed with something is a bit of a controversial topic.  I guess every parent is different and will do what they feel is best in their circumstances.  DP and I have chosen to go down the road of having our son 'labelled' or diagnosed with a known disorder/syndrome.  Some of my reasoning in choosing to do so has come from the work that I do.  To be honest, it never really occurred to me NOT to have T1 officially diagnosed.  To me, if he had the 'label', this meant that he might identify with some of what he is going through. He could take ownership of it and learn about it.  I felt that the same would be true for people who knew and worked with him and our family. 

Another factor at play is that having the official label means that T1 has rights with regards to his education.  The Additional Support for Learning Act means that he can expect reasonable adjustments in the education setting to take account of his learning and development needs.  T1 has been very lucky in that he received support in Nursery and Primary 1 before a diagnosis was made.  Not all schools are that supportive pre-diagnosis.

When you recieve an official diagnosis, it confirms that, as you suspected, all is not well with your child.  Every fibre of your being wants to run away from that fact but DP and I felt that we owed it to T1 to deal with those feelings to get through the assessment process so that T1 may benefit in the long run.  It is a big responsibility as a parent to choose to have your child offically diagnosed and the decision has not gone past without some anxiety.  DP and I can only hope that T1 will think that we made the right decision in years to come.  Whether or not he chooses to use the label when he is older is his choice, but for now, we use it to get the best care and education we can for him.

Friends and People Who Know Us...

T1 is growing up in a rural village.  He has been part of a Parent and Baby group, 2's Group, Playgroup, School Nursery in this village and has started school with the same children he went to all these groups with.  I feel that this has been incredibly helpful to T1 and our family.

There are 15 children in T1's class at school and they all know him extremely well.  These children are exceptionally caring and thoughtful towards T1.  If he is feeling distressed or upset, they often draw him pictures of aeroplanes to calm him down or cheer him up.  Of course, T1 has his 'cross' days when he can get rather grumpy with the other children but most of them seem to cope with it and tell T1 straight when he is in the wrong, which is very helpful because this is how T1 will learn about social rules, as and when they happen and when he gets immediate feedback from the other children.

T1 got a folder of things to take home at the end of Primary 1.  In this folder there must have been at least 20 or so drawings of aeroplanes and flags from the other children in T1's class.  I felt tearful then looking at those drawings and I'm tearful now writing this because I know that T1 is so incredibly lucky growing up with these children who seem to care about him, understand him so well and cope around him whatever mood he's in!  I can't thank them all enough!

I am also thankful to the parents of the children in T1's class.  The majority of them have known T1 from when he was very young.  A lot of them will have done some parent duty at playgroup or nursery and will have perhaps noticed some of T1's differences.  They seem to have a really good understanding of T1 and are very supportive of DP and I.  At times I could be seen as being a bit over cautious with T1 e.g. not leaving him at parties alone because I wonder how he will cope.  Some of the other parents have encouraged me to leave him which has given me more confidence to do so in the future.  I feel really lucky to trust the other parents enough to know T1, to keep an eye on him and to contact me if I was needed.  If any of them are reading this now then let me say a huge thank you to you, your support has been invaluable :-)

Primary 1

T1 had 2 teachers in Primary 1.  The first one left to have a baby during the Christmas holidays and the second one was a young, I presumed fairly newly qualified teacher.  T1's first teacher was involved in the transition planning meetings for T1 going into Primary 1 so was well aware of his difficulties.  I feel she really got to know T1.  T1 coped really well when his teachers changed and he really seemed to get on well with his second teacher as well.  As is the same for any parent, you hope that when you pack them off to start Primary 1 that they will get on well with their teacher and enjoy the school experience. 

During Primary 1 DP and I had a meeting with the Educational Psychologist and T1's Teacher and Head Teacher.  The following issues were discussed:

• T1 told his second Teacher that he had forgotten how to write all of his letters during the Christmas holidays so he was sent home with a white board and a laminated alphabet to practice his letters.  DP and I's take on this is that he was getting bored of his school work and had decided that saying he'd forgot his letters was a convenient way to not have to try too hard in the classroom.  He had absolutely NOT forgotten his letters, the little monkey!
• T1 had some difficulty focusing and working independently in class.  He would often say 'I don't know' which DP and I interpreted as 'I don't want to...' and he sometimes didn't do what was asked of him.  At home we had a chat with T1 about this and related it to one of his special interests.  We told him that pilots don't say 'I don't know', they always say 'I can try'.  We let the teacher know about our chat with T1 and encouraged her to say to T1, 'what do pilots say'? and this helped him to say 'I can try' and get on with the task he was meant to be doing. The teacher also used question prompts such as 'What will you do first'? to encourage focus, independence and confidence.
• T1 was slow to complete tasks and required some additional support (sometimes from support for learning teachers when available and classroom assistants) to encourage T1 to re-focus on his work and complete it.
• T1 got upset if he had to wait for his preferred acitivity at choosing time
• T1's pencil grip was not yet well developed.  He tried hard to keep a good grip on his pencil (even with triangle grip) but he tires quickly and his fingers droops around the pencil.  We let school know that he gets little chance to practice drawing and craft type activities at home.  This isn't because he isn't interested, it's because he sees it as a social activity and doesn't want to join in.  We then encouraged him to draw planes etc. on his own.  His teacher continued to use a multi-sensory approach to helping T1 to learn to write using a whiteboard, felt pens and giving opportunities for larger hand movements at first.  Where appropriate, the teacher considered giving T1 a slightly modified or alternative acitivity if he is got frustrated by not being able to do the same writing or practising of letters as the other children e.g. if the other children were making letters out of plasticine, T1 might get a slightly bigger bit of plasticine to encourage him to join in and complete the task.  At home we tried to help T1's pencil grip along by suggesting that holding a pencil in a tripod grasp was like an aeroplane with the fingers being the wings at either side and the pointy end of the pencil being the nose of the plane.  This seemed to work to encourage him to maintain a tripod grasp for a bit longer than he usually would and we let his teacher know about this too so that she could use the same technique in the classroom.
• T1 went through a phase of making sneezing noises both at home and at school and this was distracting for the other children - DP and I let T1 know that those noises are ok at home but not at school.
• T1's teacher gave the whole class a visual timetable each day but T1 would see the bits he wanted to do and kept going on about them and asking when he could do it.  The teacher used a Now and Next timetable for T1 instead so that he was able to focus on shorter term goals during the school day.
• T1 would often go to the toilet and enjoy talking to himself about aeroplanes or one of his other special interests - the teacher decided to use an egg timer to encourage T1 to go straight back to class after going to the toilet and this worked well.

The positives:

• he coped well with lining up, lunchtimes and using the cloakroom
• the added structure of Primary 1 seemed to be of benefit to him
• a 'chill-out' space was not required as T1 was so settled in class
• he had used a playground buddy well (a Primary 6 pupil) and was able to cope with his decreasing input (originally T1 thought that this meant he was meant to play with his buddy at playtime ALL the time)
• T1 coped well with relief and specialist teachers

 DP and I went along to parents night towards the end of T1's Primary 1 year.  We were pleased to hear that his teacher had had some experience of teaching another little boy with Asperger's Syndrome in a previous job.  She seemed to be clued up on the subject.  It was obvious that she had really tuned into T1.  She said that she took a few minutes every morning to ask T1 how he was doing and that she would often know from his reaction whether he was having a good day or a 'I'm in a grumpy mood today' day.  She showed sensitivity around topics that T1 might struggle with and was ready to give extra support as required e.g. the chilren being shown pictures of how they would respond in certain situations and how they might feel about it - a subject that T1 might struggle with. 

I don't think T1 will ever feel that school is an amazing place and get excited about it but DP and I were so happy that he had completed his Primary 1 year with no major problems.  When we picked him up on his last day of Primary 1, I felt so proud of him! :-)

Looking for a diagnosis...

Following the Educational Psychology meeting, I approached my GP to ask if he could check if T1 had been referred to the Child Development Team when he was seen by our Health Visitor when he was 2.  It turns out that he hadn't been referred then or there was no record of it in his GP record.  I asked our GP if he would refer him and he agreed.  He knows that I work with people who have Autism Spectrum Disorders and that I had compiled a chronology of T1's differences in development over the last couple of years.  He asked me to email it to him so that he could forward it on with the referral.

Within a few weeks, we received a letter inviting us to go along to meet a Paediatrician at a specialist nursery school for assessing children with developmental difficulties.  I have a friend who works there so I knew a wee bit about what it might be like.  T1 was age 5 at this point and was in Primary 1.  Myself, DP and T1 met with the Paediatrician and a Nurse.  The nurse did some assessment tasks with T1 whilst DP and I discussed our concerns with the Paediatrician.  Whilst in there, I had another attack of the 'hypochondriac mother' feeling that I'd had when discussing my concerns with the Health Visitor when T1 was 2.  I kept reassuring myself that I had some idea of what I was talking about.  This came across in my description of T1's difficulties and the Paediatrician was very understanding and really listened to us.  Because of my knowledge of developmental disorders, she didn't feel that it would be of benefit for T1 to be assessed in the special nursery school because I really just needed the diagnosis, the strategies for afterwards I felt I knew enough about to get by.  Because of where I work, the Paediatrician also acknowledged that I would want someone to assess T1 who had a fair bit of experience in assessing and diagnosing ASD.  We agreed for her to refer us onto the Child Psychiatry Team.

Whilst we waited to be seen by them, T1 was also seen by the school Doctor and Nurse at his school for an assessment.  She knew that he had been referred to the child Psychiatry team and seemed satisfied with this and felt that we probably didn't need to see her again.

Within 6 weeks or so we had an appointment through for T1 to see a Consultant Child Psychiatrist.  I felt confident that this person would have sufficient experience to be able to assess T1.  We went along to our initial appointment which lasted about an hour and a half.  She had a copy of the chronology that I had typed so we didn't need to go into detail about all of T1's developmental differences.  She took a history from DP and I on our own health and that of T2.  She did some assessment tasks with T1 and spent some time with him on his own.  Between this appointment and our next appointment, the Child Psychiatrist asked T1's teacher to complete some questionnaires and for an up to date school report.  For the second appointment, I saw the child Psychiatrist on my own to have a further discussion about a possible diagnosis.  After these two appointments, T1, now age 5 years and 6 months was diagnosed with Asperger's Syndrome, a condition on the Autism Spectrum.  The Psychiatrist said that she would review him in 6 months, support any claim I made for Disability Living Allowance and refer T1 onto the Paediatric Occupational Therapy service for assessment of his motor, coordination and sensory difficulties.

T1 was seen for his 6 month check up appointment in September 2010 and because he is doing so well at school and at home, he will now be discharged from the Child Psychiatry service.

We also had another meeting at school in November 2010 with T1's teacher, DP, the Head Teacher and the Educational Psychologist to review his progress from Primary 1 into Primary 2 and to acknowledge the diagnosis of Asperger's.  All appears to be going really well at the moment and there is good communication between school and DP and I.  T1 has now also been discharged from the Educational Psychology Service.

Educational Psychology Input - Age 4

In his last term at school nursery, T1 was observed in nursery informally by his Educational Psychologist.  Following this, she called a Formal Consultation Meeting at school to discuss her findings and to plan for T1's transition into Primary 1.  At this stage, T1 did not have a formal diagnosis of ASD or Aspergers so we were really just discussing how he presented at home and at nursery and the benefits of a possible diagnosis on his education.  DP and I said that we would like to pursue an official diagnosis so that T1 could be as supported as he needed to be in primary school.  I let the school staff and Educational Psychologist know that I would be seeing my GP to ask him if T1 had been referred to the Child Development Team and if not, that I wanted him to be.  During the meeting we also discussed practical things that might help T1's tranisition to Primary 1 such as practicing the lining up process, meeting his teacher a bit more than the other children and having his own space at the edge of the changing room to get changed to avoid the bustling about of other children when he had to concentrate on getting changed.

I feel that nursery and school staff were very supportive at this stage.  He recieved a good report from nursery at the end of the year and this was due to their patience and effort at helping him in areas where he was struggling.  One example of this was when they sent T1 home with the nursery camera to take some pictures of his favourite toys so that they could use them on a chart to encourage him to get himself changed at the start and end of nursery.

Hints and Tips for Nursery Staff - Age 4

Following my discussion with the nursery teacher, I compiled the following list to help the nursery staff get to know T1's ways whilst we awaited input from the Educational Psychologist:

·         Group play - Has a tendency to wander off if over-encouraged to join in with group play – if he joins the group you could say ‘hi ________’ to acknowledge him rather than asking something of him, unless you have to obviously

·         Hyper-arousal - If other children are being noisy or distressed, this can sometimes make T1 hyper-aroused to the point that it can become difficult to calm him down again or he can become distressed –– at home we encourage him to have some ‘chill-out’ time when he has become so aroused that he starts to become distressed (not having a tantrum – this is dealt with in a behavioural way with consequences, time out etc.) – perhaps there could be a place in the nursery that he could go to have ‘chill out’ time if required – this may also be useful when he is getting ‘cross’ such as when he is struggling to share etc.

·         Sensory – he doesn’t like light touch especially on his head so he may struggle with physical contact with others and can sometimes be boisterous with it so that the touch doesn’t feel too uncomfortable for him – he is especially sensitive around his neck and ears to the point that he can drop to the floor if someone touches him there  – T1 is a fussy eater and struggles to try new things

·         Motor skills – T1 is slightly behind on gaining motor skills such as attempting to pedal a bike, co-ordination and balance – he can be fidgety and take longer to do things such as dressing and tends to give up easily

·         Fixed thinking – T1 can be difficult to reason with – he can be quite fixed in his thinking and it may take some effort to help him understand your point of view – it is helpful to keep explanations as simple as possible and let him know exactly the way it is

·         Interests – he goes through phases of intense interest in objects/toys and could play with them constantly if left to his own devices – he can be gently encouraged to try other things

·         Coping with change – T1 can find change and change in routine difficult to cope with – we usually make an effort to pre-warn him that things are about to change or when play-time is going to finish and what will be happening next

·         Communication – it is useful to say his name at the start of the sentence when you are addressing him as he may not acknowledge you otherwise

·         Imaginary friends – T1 has three imaginary friends at the moment:  Evie, Jojo and Tintin – we don’t collude or elaborate with stories regarding these friends but when he tells us stories about them then we just nod and smile and say ‘ok’ – if he gets disciplined then he can sometimes go on a rant about these friends although this has been less so recently

 This information really seemed to help the nursery staff to get to know T1 better.