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.

Age 4 - 5

From the work I do in screening for ASD at work, I knew that this year (age 4 to 5)  is important in identifying key differences in development for a diagnosis of ASD.  DP and I noticed that T1 continued to be different from his peers in the following ways:

• his voice sounded too mature for his age - he would speak like an old man at times, funny but odd too from a 4 year old
• he went through a 2 month phase of faecal soiling and smearing - my feeling is that this was something to do with him wanting sensory input and that he enjoyed smelling strong smells?
• he continued to have periods of  hyperarousal/overstimulation and distress at times which required extra support from nursery staff - he never required to be removed from nursery but needed to be removed from the normal teaching environement to calm down
• he continued to have some specialist skills and interests including remembering people by the types of cars they drove, knowing the engine types of aeroplanes and a fascination with aerials and sattelites
• nursery teachers reported that he was clever for his age
• he showed an interest in being very helpful to younger children but not necessarily his peers
• he could appear defiant at times and went through a period of shouting 'shut up' to nursery staff - this was resolved by doing some puppetry work at home
• he seemed to be playing more with other children although he never seemed to initiate this
• he continued to struggle with any change in his routine
• he struggled to contain and cope with feeling angry or 'cross' and went through a phase of hitting out at his younger brother - this was resolved by teaching him some time out techniques

T1 started school nursery at age 4 and I didn't mention that I had concerns about his development initially.  In my mind, I knew that a qualified teacher would be working with him and that she would pick up on his differences in time.  Sure enough, I put my name down to do parent duty in the nursery around 3 months after he started there.  The teacher said that it was good that I was there as she had been wanting to discuss T1's progress with me.  She had very quickly picked up on some of his unique traits and had tuned into him very well and shared much the same concerns as DP and I.  I let her know that I thought he had an Autism Spectrum Disorder.  Given our shared concerns she let me know that she would refer T1 to the school Educational Psychologist for further advice.  I also said that I would give nursery some hints and tips on things that I have found to work at home and ways to deal with T1's quirks.  Finally, it felt like the process of looking into a possible diagnosis was moving along.

Age 3-4

Here are some more bits and pieces DP and I noticed about T1 between the ages of 3-4.  We plodded through this year thinking that T1 was being referred to the Child Development Team so we just continued to take notes on any differences we noticed:

• T1 moved to playgroup for 3-4 year olds and seemed to settle better ?due to increased structure and routine e.g. circle time and tidy-up time
• he struggled to sit with the group at circle time and would often want to wander off and do his own thing
• he struggled to stand in the queue for snack - he would jostle those in front and behind him and would wander off and have to go to the back of the queue again
• he showed an unusual interest in objects - he would sniff most things and explore them with his nose
• he had poor awareness of others' personal space - he would get very close to someone if he wanted their attention
• he showed signs of hyperarousal and overstimulation both at home and at playgroup including running back and forth repeatedly and making random noises like squeaking
• he wasn't really interested in playing with his peers and would often play on his own given the choice
• he started to become very interested in a limited range of topics both at home and at playgroup including a book about fighter jets that we got from the library (and to this day it has never been returned, we had to pay for it!); elephants; the playgroup slide and trains
• he was able to increase the variety of food he would eat after trying different food with the other playgroup children at snack time - his general fussiness continued though, this was not texture specific but he would generally only eat those foods that were familiar to him
• we had trouble getting him to stay in his bed - we tried the rapid return technique (Dr Tanya Byron) for 5 months and decided to just read to him until he fell asleep which worked a treat (he can settle himself to sleep now)
• T1 wouldn't generally know you were speaking to him unless you used his name at the start of a sentence
• he didn't seem interested in learning new motor skills such as getting dressed and putting on his shoes etc.
• he was able to use some imaginative play but usually only on his terms and including one of his special interests
• he had 3 imaginery friends who he would blame if he was naughty and that he would have a rant to on his own when he was overstimulated or angry
• he had sensory issues especially around anyone touching his head which made going to the hairdressers very difficult
• he showed difficulty empathising with others 

At the playgroup parents night, the Playgroup Manager again expressed her concerns about T1's Development and I let her know that as far as I was aware, he had been referred to the Child Development Team.

More Signs... Age 2 to 3

When T1 was seen by his Child Psychiatrist recently for diagnosis, I had typed a chronology of all the things I had noticed in his general development to aid my memory at the appointment.  Here are some points from age 2 to 3:

• T1 attended 2's Playgroup, he settled well but the staff noticed that he became upset easily when other children were upset and sometimes distressed ?as if he didn't know how to handle the situation
• Playgroup staff noted that T1 found it difficult to identify emotions
• Both at playgroup and at home we noticed that T1 would have the normal 'terrible 2's' tantrums but that he would also appear to be really distressed at times
• T1 struggled with change to his normal routine e.g. he became distressed at playgroup when they were doing a fire drill instead of their usual routine
• he became much fussier with food and developed quite a restricted diet
• he was sent home from 2's group once as he became too distressed to contain
• by 30 months he could speak in clear 5 word sentences, could count 1-10 and knew most of his colours and the alphabet
• He had his first haircut and became very distressed by the hairdresser touching his head
• seemed to struggle more than the other children to learn to share
• he woke frequently in the night and was an early riser (5.30-6am)
• we noticed that he had poor motor and coordination skills e.g. took a long while to be able to jump with both feet and he seemed to give up more easily when trying physical tasks
• very interested in reading
• T1 was potty trained day and night by 35 months
• he was less able to engage in imaginative play with his peers

There was a little parents night at the 2's playgroup and I went along to hear what they thought about how T1 was getting on.  I kept my concerns about his development to myself initially to see if the Playgroup Manager shared any of them.  She did share quite a few of them and I shared my concerns.  Following that, I arranged to see my Health Visitor who visited us at home.  DP and I shared our concerns and she spent some time with T1 on his own.  I felt like I was some kind of hypochondriac mother and was in a difficult position in that I felt that I knew more about Autsim Spectrum Disorder (ASD) screeening than she did.  She left us that day saying that she would refer T1 to our local Child Development Team.   To my knowledge, she never did (or there is no record of this anyway).

A big milestone for T1 during this year was that he became a big brother to T2 :-) 

Tell Tale Signs??? 12-24 Months

After T1's 1st birthday, DP and I decided to try for another baby.  T1 was doing well but there were still some niggles at the back of my mind regarding his development.  As T1 was my first baby, of course I didn't really have a reference to what was 'normal' development and what might be different to the norm.  I knew some child development theory from books and what I knew from work.  I relied on chatting to my friends who had older children and work colleagues for advice.  They told me that it probably wasn't much to worry about and that T1 was so young to be worrying about his development too much.  T1 did lots of the normal development stuff but I guess it might be useful to share some of the possible early tell tale signs here:

• T1 was happy to go to any adult at any time to be looked after, he didn't seem to show the usual separation anxiety that babies have, except when I left him alone with other babies
• At around the 18 month mark, he became very fussy with food having eaten anything and everything before then
• From around 12 months, T1 seemed to only be interested in certain parts of toys e.g. the wheels or looking at the screws on the back of a toy

I discussed my concerns with DP who thought that T1 was fine and that given the work that I do, I was probably over analysing the situation.  I had Autsim Spectrum Disorder or Asperger's Syndrome in mind.  That was tricky for me to deal with, of course anyone can put a child into a certain box if they wanted to.  I tried to remain neutral and knew that he would display more differences in his development in the next year if my 'mothers instinct' was to be correct.

In the Beginning...

I married Daddy Pig (DP) not long after I graduated from University.  We were delighted that we fell pregnant so easily (even if it felt like it was taking forever at the time lol).  Our first son entered our world in August 2004.  It was a difficult birth to say the least but he was just beautiful... blue eyes and blonde hair - perfect!  I feel tearful writing this because it is not often I allow myself to think fondly of that day, but years on, I know it was very special :-)  Thing 1 (T1) was a contented baby on the whole.  He had colic from about 4 weeks to 10 weeks but other than that, he settled into a marvellous routine.  Was it my love of routine or his that made that work? We will never know but it worked well.  He ate well and slept well.  At 5 months old he gave out the most amazing heartwarming giggles.  I went back to work when T1 was 5 months old and DP became a stay-at-home dad.  He crawled at 11 months old.  I guess the first time I wondered if he was different to other babies of the same age was when I met up with a couple of friends who had similar age babies around their first birthday.  T1 did not seem to cope with the other babies crying or them looking at him.  It was odd.  I put it to the back of my mind though and carried on with trying to figure out this mummy malarky.