Sunday, 29 June 2014


“While little is known about the interaction of ASC and aging, it is generally accepted that adults with ASC 1) tend to be fairly poor self reporters when it comes to health issues, and 2) as a group tend to be fairly sedentary. As such, concerns related to the long term health and wellness of adults with ASC should be at the forefront of any discussion of appropriate services.
–The Current State of Services for Adults with Autism,
prepared by Peter F. Gerhardt, Ed.D., Organization for Autism Research

I have two sons so can only really talk about puberty from a boys perspective in the sense of its effect on Ryan while also dealing with Autism and vice versa how his Autism has affected his dealing with puberty.

Puberty is a confusing time for any individual but for Ryan with speech and language difficulties the confusion can be more profound. He is not necessarily able to understand what is being said to him about the changes that he is experiencing, nor can he clearly verbalise his confusion, questions or how he is feeling to me, for me to be able to support him through the changes. 

Fortunately we have a very good school nurse who is very approachable and really understands how difficult this subject is for any child. She kindly gave me copies of the same materials/leaflets she has used with the children so the work I then did/am doing with Ryan, reinforces what he has been told already.

We have used the 'About you personal wellbeing schools programme'.

I started the conversation with him, there is simply no point in being remotely embarrassed about this subject, every single person goes through it and your child, regardless of their abilities or understanding is going to need your support. You need to know your facts so research if you are not sure (see the useful contacts page for further links) and be assertive (even if you are nervous). 

One day as he was showering - now that is a whole other story; Boys generally don't care much for personal hygiene but Ryan has even less clue or 'careness'; anyway I digress. I noticed he was changing.  I also knew he had already had a talk in year 6 at school so simply said to him "So Ryan I can see you have started puberty, are you able to tell me if you feel any different or do you have any questions?"

Now although Ryan’s understanding and communication skills have improved beyond belief, since he was first diagnosed, it is still NOT cool to talk about 'hairy winkies' in front of your mum. I wasn't put off though and reiterated what he was likely to be feeling and what other changes he could expect. 

As I have talked about previously I keep a diary of things that happen, need to remember or simply need to get off my chest. What follows now is a diary extract of an incident that I have put down to puberty.
Monday 3.2.14 (Ryan is 12) – Well what the **** just happened? Came up to bed at 9pm went in to wish Ryan good night to find him playing on his phone, as I opened the door to his room, he scrambled to drop his phone and pick up his pencil and attempt to look like he was doing his homework that he had told me he had done at 7pm. I shouted at him (rookie mistake) about his obsession with his phone and xbox. What ensued was a full blown meltdown that I haven’t seen for almost 2 years. He has smashed some of his room and told me he hates me. I have obviously walked away and tagged teamed Dadi Skilts who is now attempting to calm Ryan.  I am at an absolute loss, didn’t see this coming at all and have no idea how best to deal with it now. 
I was sat writing this and could hear Duncan talking to Ryan. It was heartbreaking to hear how hard Ryan is finding life at the moment (hormones & puberty I think).  I simply went into his room to find Dadi Skilts on the edge of the bed with Ryan, knees pulled up/legs bent with his head on his knees, crying gently. I just sat down next to him and hugged him (this was a massive risk as Ryan dislikes being touched and the very few hugs I have ever had have been initiated by him). It worked though I didn’t speak just sat there and he eventually stopped crying and even hugged me back.  We started to talk a little bit about nothing in particular and then he said he was tired, so I put him into bed. 

A very good article from a fellow blogger on puberty here

Friday, 27 June 2014


Melatonin and the sleep cycle.


In humans, melatonin is produced by the pineal gland, a small endocrine gland located in the center of the brain but outside the blood-brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature, but it is the central nervous system (specifically the suprachiasmatic nuclei, or SCN) that controls the daily cycle in most components of the paracrine and endocrine systems rather than the melatonin signal (as was once postulated).

Infants' melatonin levels become regular in about the third month after birth, with the highest levels measured between midnight and 8:00 AM.

In humans, 90% of melatonin is cleared in a single passage through the liver, a small amount is excreted in urine and a small amount is found in saliva.
Human melatonin production decreases as a person ages. Also, as children become teenagers, the nightly schedule of melatonin release is delayed, leading to later sleeping and waking times.

Sleep Cycle

Ryan has never required much sleep which you can imagine was very hard on us when he was little. I cannot give enough respect to single parents that have to battle this alone. There is no way I would have coped without support from Dadi Skilts taking shifts.  As soon as Ryan was diagnosed with Autism the Paediatrician offered us Melatonin on prescription. I had never heard of this and went away to do some research first, but felt from what I had read that is was worth a try.  Well, what a difference almost instantaneously from the first night. He SLEPT. Yes slept for his first ever full night.

He took 4mg a night, this proved highly successful and oh wow if we forgot to give it to him.  My hubby and I were invited to a very rare night out and my best friend agreed to have Ryan overnight, unfortunately, we forgot to pack his Melatonin and at 11pm she rang me in tears because “she had never seen him like this before”, he was becoming violent because he couldn’t settle and her husband vowed never to have Ryan ever again.

Fortunately, we are all still friends and Ryan does still spend time with them. He gets on really well with her boys and they are a superb family. Jo is my best friend and rock. You need to surround yourself with a good strong support network. My family and in-laws are all amazing and have all helped Ryan to get where he is today.



Just to say though in the UK it is only available on prescription from the Paediatrician, not even our doctor would prescribe it, so I had to make a phone call every single month as I only got a 30-day script each time, but it was so worth it for us.  It, unfortunately, won’t work for every child, but by all means, give it a try it is naturally produced by us anyway it is just that children on the spectrum don’t seem to produce enough of it.

As Ryan has matured the tablets no longer work for him. He still does not sleep well but has learned techniques to amuse himself. He reads or listens to his mp3 player.  He knows the rules of no electronics after 9pm and as he has now started puberty his sleep patterns are going all to pot anyway.

Wednesday, 25 June 2014

Limbic System

Since Ryan was born in 2001, I have read hoards of information on Autism, child development, healthy eating, and alternative therapies to name but a few and as I have said previously I am in no doubt that foods play an important role in explaining some of Ryan’s difficulties.

I try very hard (but am not perfect) to maintain a healthy Limbic System as I believe it has a strong role in our health, wellbeing and development.

The Limbic system supports a variety of functions, including emotion, behaviour, motivation, long-term memory, and olfaction. It appears to be primarily responsible for emotional life and it has a great deal to do with the formations of memories.
Susanna Heinze

Obviously all of these are very prevalent characteristic ‘symptoms’ of autism, so by trying to maintain a healthy balance and approach I hope to better support Ryan on a day to day basis.

As warm-blooded mammals, we are dependent on the development of emotional attachment to the parents. We feel good when we are safe, well fed and we know where our parents are. In that state of well being, we learn and develop language and social skills. Conversely, when we are lost, hungry and in danger, we experience panic. That panic involves the immune system and begins with an adrenalin release. The immune system takes over from the emotional system, and we revert to a more primitive state of fight-or-flight, survival instinct. In that state, learning, language development and social skills are not important to survival.

It is believed by some that in autism, the immune system is reacting to lutein as if it were a life-threatening pathogen. The immune system takes charge of the body's vital functions - digestion, metabolism, breathing, heart rate, temperature - and all superfluous activity, including social activity, stops until the reaction ceases. But for the autist, the reaction doesn't cease because lutein is coming into the body too often. In the infant, there are generally few exposures to lutein, but during the second and third years lutein-containing foods begin to enter the diet frequently. The response to the first exposures might be fever, and many parents report fevers during early childhood. (I have already commented on Ryan’s illnesses and ridiculous fevers). The child often begins to refuse some foods (can can become a very fussy eater). The altered immune system often over-reacts to immune challenges as is seen in the frequent reports of adverse reactions to vaccinations. Then, as the lutein exposure becomes continual, the immune system has to adapt, as continual high fever is dangerous to the brain. With an ongoing immune system activity, the limbic system switches over to a state of defensiveness and survival. Development of social behaviour is arrested in favour of survival, defensive and coping strategies to minimise arousal and social expectations. Depending on the innate strength of the individual, mental and intellectual functioning may develop, despite the social handicap, in idiosyncratic ways. For some high functioning autists, the strategy of avoidance takes the form of developing unique skills, or intensive reading and studying, or focus on a particular branch of math or science or music.

Secondly The hippocampus is linked to learning and memory. When the hippocampus is removed from an animal, it will express a series of behaviours classified as self-stimulatory. These behaviours are repetitive body movements or movements of objects . For example, tapping ears, sniffing people, hand flapping, scratching, or rocking back and forth. Two hypotheses of this behaviour have been drawn. Either the actions are to stimulate (hyposensitive) or to calm (hypersensitive). In the case of the autistic person, the second hypothesis makes sense. To the autistic the environment is too stimulating and by doing a repetitive motion the environment can be blocked out. The environment is too stimulating because the brain can not process the sensory inputs as fast as they are being received. New information can not be entered into the memory quick enough.

From my own research I have complied the following information on e-numbers that particularly affect Ryan. Now I am not for one minute suggesting these are all inherently bad or that anybody should take my word as absolute fact and eliminate these as of right now. I am simply sharing my findings with anyone interested enough to know more about our journey with Ryan’s autism.

E 102 Tartrazine                         
E 110 sunset yellow FCF
E 120 cochineal                                  
E 124 ponceau 4R
E161 Lutein
E 211sodium benzoate
E 621 Monosodium glutamate (MSG)

For a full list of my e-number research see my separate page.

Go to the following website for tips on maintaining a healthy Limbic system.

Monday, 23 June 2014


Throughout Ryan’s school life he has been subjected to many exclusions, some of which have certainly not been the best way of dealing with the situation and quite likely simply used as an easy way out.

The following information is what was given to me when I was battling against Ryan’s first school instead of us all working together. It is all taken from the SNAP Cymru website.  They have provided me with valuable support and guidance over the years that I am very much appreciative of.

Voluntary Exclusion - what does this mean?

Voluntary exclusion is where schools ask parents/carers to keep their child at home as a way of dealing with behavioural difficulties. This is not good practice and denies pupils their rights to an education and denies both parents and pupils the right to appeal against this form of exclusion. Local Authorities (LA) will consider appropriate measures where schools are found to be using voluntary exclusion.

What can parents/carers do?

  • Parents/Carers sometimes feel pressurized to take their child out of school.
  • If parents are asked to keep a pupil at home, they should ask the school to make it official i.e. ask the Head Teacher to put it in writing.
  • Ask the school for a meeting to discuss the problems to see if something can be done e.g. change of class, extra support. Parents and carers must remember that it is an offence to fail to secure regular schooling for a child and parents may be at risk of prosecution. 

Fixed Term Exclusion - what does this mean?

This is an exclusion where it has been decided that a child cannot attend school for a given number of days because of an incident or a series of incidents that have happened which are considered to be a breach of the school’s behaviour policy.
Fixed term exclusion can be anything from half a day up to a maximum of 45 days in a school year. Only the Head Teacher or the most senior teacher on site can exclude.

How should parents/carers be informed?

School should inform parents/carers immediately by telephone whenever possible. This should be followed by letter within one school day and must explain:
  • the length of exclusion e.g. two school days
  • the reason for the exclusion
  • the parent/carers and pupil's right to make representations to a Pupil Disciplinary Committee (PDC). The PDC is not always required to meet but they must consider any representations from the parent/carers and pupils. Most schools PDCs do meet and invite representations.
  • the date and time when the pupil should return to school. (Often the school will request to see the parent before the pupil returns to school).
  • the arrangements for the pupil to receive work set by the school and for the work to be marked
  • parents’ rights to view and/or obtain their child’s school records upon written request under the Education (Pupil Records) Wales Regulations 2001
  • the contact details of someone in the Local Authority (LA) who can give advice on the exclusion process
Some LAs give the number of their local Parent Partnership Service. In Wales this is usually SNAP Cymru.

What the school will do

  • Allow the pupil a chance to give his/her version of what happened.
  • Interview other witnesses including other pupils and staff.
  • Write an account of the reason for the exclusion in readiness for the PDC, if one is to be held.
  • Gather information on any support that the pupil may have received, including who provided the support and for how long.
  • If a PDC is to be held, circulate to all parties within 5 days of the meeting any written statements (including witness statements) and a list of persons who will be present at the meeting.

Additional Information

Exclusion should always be a last resort. Strategies and individual plans to meet needs should have been explored beforehand. Exclusions should not be given in the heat of the moment unless there is an immediate threat to the safety of individuals. In all cases of more than a day’s exclusion, the school should set and mark work, which parents/carers need to arrange to collect and return.

Permanent Exclusions

Permanent exclusion is when a school feels a pupil has broken the school rules (behaviour policy) and that pupil should no longer remain at that school because of an incident or incidents that took place.
Only the Head Teacher or the most senior teacher on site can exclude. A Head Teacher may permanently exclude for a first offence under certain exceptional circumstances.
Permanent exclusion is a serious decision and should normally be used as a last resort when all other strategies and support have been tried without success.

How should parents/carers be informed?

The school should inform the parent/carer by telephone immediately, whenever possible, followed by a letter within one school day which should explain:
  • that the exclusion is permanent
  • the reasons for the exclusion
  • the parent/carers and pupil’s right to make representations to the Pupil Disciplinary Committee (PDC) and the latest date the meeting can take place
  • the parents/carers rights to view or obtain their child’s school records upon written request under the Education (Pupil Records) (Wales) Regulations 2001
  • the contact details of the clerk to the PDC
  • parents/carers will need to inform the clerk if they wish to attend the PDC and if they will be accompanied by a friend or a supporter such as a SNAP Cymru Independent Parental Supporter.

What can parents/carers do?

  • Talk over the incident(s) with the child and take notes.
  • Find out details of the incident, by asking how?, where?, when?, and by whom? type of questions.
  • Ask the school for a copy of its behaviour policy.
  • Look at possible causes and if sufficient levels of support were in place.
  • Compare your child’s version with the accounts of others.
  • List any questions or queries you may have regarding the exclusion.

What the school will do

  • Allow the pupil a chance to give his/her version of what happened.
  • Interview other witnesses including other pupils and staff.
  • Write an account of the reason for the exclusion in readiness for the PDC.
  • Gather information on any support that the pupil may have received, including who provided the support and for how long.
  • Circulate to all parties within 5 school days of the meeting any written statements (including witness statements) and a list of persons who will be present at the meeting

Additional Information

Exclusion should always be a last resort. Strategies and individual plans to meet needs should have been explored beforehand. Exclusiosn should not be given in the heat of the moment unless there is an immediate threat to the safety of individuals.

The school should set and mark work, which parents/carers need to arrange to collect and return.

Saturday, 21 June 2014

Additional Needs

I have never really liked the term ‘special needs’. Every child is special and every child has needs, so I therefore have previously used Specific Needs.

Just as I have never really liked the term ‘disabililty’. Ryan and I use and much prefer ‘diffability’; to mean Different Abilities.

In my previous post I talked about the statutory assessment process that we went through with Ryan who now has a legally binding document setting out his specific educational needs. My original intent for the focus of this post was to go into greater detail on the 26 week assessment process and discuss Ryan’s statement to offer advise to anyone embarking on a similar journey.     

I have however, now changed my mind on the focus of this post and decided instead to discuss additional needs. I will therefore not to bore you with all the details of statementing for 2 reasons:

1st it is 16 pages long and secondly, from this year, 2014, statements no longer exist. They have been/are being phased out across the UK and are being replaced with an alternative system “which is more flexible, needs led and less bureaucratic” (Quote from council documentation) called Individual Development Plans (IDPs).

The term SEN has now also been replaced (yay) with ALN – additional learning needs.

There is lots of information about these new plans on various news sites if you do a quick Google search and the NAS has a very good pdf document detailing the new proposals.  I am no expert on this new system as Ryan’s statement will still continue for him. 

Progress not perfection

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Thursday, 19 June 2014

ALN - What does it mean?

Children have additional learning needs if they have a learning difficulty, which calls for additional educational provision to be made for them.

This short definition emphasises the two key phrases that are part of the full legal description of special educational needs found in the Education Act.  The term SEN is no longer considered acceptable and ALN is now universally used in its place. 

Put simply, children with additional learning needs may find it harder to learn than most children of the same age, or have a disability, which makes it difficult for them to take part in school life. As a result they may need extra or different help to make the most of the learning opportunities offered by the school.

Learning difficulties can mean:
·        Difficulties in some or all areas of work.
·        Particular problems with reading, writing or mathematics.
·        Emotional, behavioural problems or organisational difficulties.
·        A physical disability.
·        A medical or health problem.
·        A sight, hearing or speech difficulty.
·        A general delay in development.
·        Expressing themselves and understanding what others are saying.

What is ALN provision?
ALN provision is the different or extra help given to children that face barriers to their learning. This provision can mean extra support in class, different strategies or approaches, small group work or individual help.  It can also mean individual or group work outside the classroom or additional help from specialists outside the school.

How many children have ALN?
20% of children on average have additional learning needs at some point in their school life.  Some children may have additional learningneeds for a short time; other will require additional provision throughout school.  Children may have needs in particular curriculum areas or subjects, whilst others will require support in most aspects of their education.

Stage 1 – School Action.
The school with your assistance will coordinate appropriate help within the class such as: Different learning materials or equipment; Small group support or individual attention; Help from an extra adult; Different ways of teaching things; and create one or more of the following:
·        Individual Educational Plan
·        Behavioural Plan
·        Pastoral Support Plan
·        Personal Educational Plan
Which documents what the school will do to help your child and what is required from your child to help themselves. It will include: Short term targets for your child; Ways in which the teachers will work your child to achieve these targets; The additional support the school will provide through it’s own resources e.g. additional learning support time; How you can help your child achieve their targets at home e.g. reading with your child every day; A review date which should be at least twice a year. Ideally reviewed termly.

If you child does not make enough progress despite support from within the school setting, continues to make little or no progress in certain areas or continues to work at levels well below that expected of children at similar age, the teacher and ALNCo with you agreement may involve specialists from outside the school.

Stage 2 – School Action+
Outside agencies such as:
·        GP
·        Specialist Teachers
·        Educational Psychologists
·        Speech and language therapists or other health professionals.
·        SNAP

Will help with assessing your child’s needs and can provide the school with advise and strategies for new targets.

Stage 3 – Statutory Assessment
School action and School action+ have still not helped you child to access the curriculum or catch up to a level you would expect then a very small number of children with significant difficulties will require their needs to be considered in greater depth.  A statutory assessment can be requested by you as a parent or by the school or even better by both to the Local Educational Authority (LEA).  It is a very detailed investigation of a child’s Educational Needs and what additional support they require to meet those needs.  

Ryan was issued with a statement of educational needs in 2010, after I fought for 5 years to have his needs assessed.  He did go through all of the stages as I have previously told in our story to date.

It really helped all of the stages I have been through to keep a diary all of Ryan’s life detailing: illnesses; diet; exclusions; sensory issues; meltdowns; developmental stages, to name but a few.

The more you record the more evidence you will have and the more detailed, specialised, personalised assistance can be tailored for your child.

It is about knowing your rights and fighting for the rights of your child to receive a full inclusive education.

Tell me and I forget,
Teach me and I remember,
Involve me and I learn.

Benjamin Franklin

Tuesday, 17 June 2014

Ten Things About Autism

Ten Things About Autism

10 Things About Autism 

1. Behaviour is communication. All behaviour occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behaviour interferes with my learning process. But merely interrupting these behaviours is not enough; teach me to exchange these behaviours with proper alternatives so that real learning can flow. Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behaviour. Negative behaviour usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behaviour to find the source of my resistance. Keep notes as to what happened immediately before the behaviour: people involved, time of day, activities, settings. Over time, a pattern may emerge.

2. Never assume anything
. Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself: Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids. Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.

3. Look for sensory issues first
. A lot of my resistant behaviours come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me. The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding. Ask the school occupational therapist for sensory-friendly 
ideas for the classroom. It's actually good for all kids, not just me.

4. Provide me a break to allow for self-regulation before I need it. A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the imperative. "You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do.

6. Keep your expectations reasonable. That all-school assembly with hundreds of kids packed into rows and some guy droning on about the school fayre is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter.

7. Help me transition between activities
. It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.

8. Don't make a bad situation worse. I know that even though you are a mature adult; you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behaviour of your own. Beware of these responses that prolong rather than resolve a crisis:

*Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.

*Mocking or mimicking me. Sarcasm, insults or
name-calling will not embarrass me out of the behaviour.
*Making unsubstantiated accusations
*Invoking a double standard
*Comparing me to a sibling or other student
*Bringing up previous or unrelated events
*Lumping me into a general category ("kids like you are
all the same")

9. Criticize gently. Be honest - how good are you at accepting “constructive" criticism? The maturity and self-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you. Please! Never, ever try to impose discipline or correction when I am angry, distraught, over stimulated, shut down, anxious or otherwise emotionally unable to interact with you. Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than towering over me. Help me understand the inappropriate behaviour in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behaviour. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response. Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away. It helps me if you yourself are modelling proper behaviour for responding to criticism.

10. Offer real choices - and only real choices
. Don't offer me a choice or ask a "Do you want...?" question unless are willing to accept no for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all. You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life. Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?" Follow by showing me: "See how Jason is writing his name on his paper?" Giving me choices helps me learn appropriate behaviour, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why: "I can't give you a choice in this situation because it is dangerous. You might get hurt." "I can't give you that choice because it would be bad for Danny" (have negative effect on another child). "I give you lots of choices but this time it needs to be an

adult choice." The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom.

Sunday, 15 June 2014


[nee-ol-uh-jiz-uh m]
1. a new word, meaning, usage, or phrase.
2. the introduction or use of new words or new senses of existing words.
3. a new doctrine, especially a new interpretation of sacred writings.
4. Psychiatry. a new word, often consisting of a combination of other words, that is understood only by the speaker.

When Ryan was little he didn't communicate in a typical developmental way. Ryan has never been typical. He spoke late and when he did start speaking he had his own 'funny' little language, that I had just about tuned into and could sort of understand, but no one else could not even his dad. 

Throughout his life Ryan has said some of the strangest and sometimes highly inappropriate things, but this post is going to focus on some of the funniest of things he has come out with. To which friends and family now simply brush off with a shoulder shrug and smirk as “well that’s Ryan for you….”

· Speech Therapist (ST): How do we keep dry during rain?
Ryan: Use a towel.

This shows Ryan picking up on the literal word of dry. Obviously we were expecting an answer of umbrella.

· ST: How do we keep warm during winter?
Ryan: Use a blow torch or swallow a lighter.

· ST: What do we wear to go swimming?
Ryan: I can’t go swimming because I am 50% fire. (We are not 100% sure what Ryan meant by this. I think it has to do with his Pokemon obsession.)

· What you and I call shoes, Ryan calls – Footprotectors. (see the logic).

· One day he lost a toy gun and asked me to help him find it. I said “Don’t worry it can’t have gone far.” To which he replied “It won’t have gone anywhere it hasn’t got legs.”

· I asked him once as I was helping to dress him. “Pass me your legs.” (so I could put his socks on). His response, “I can’t give you my legs mummy, how will I walk?”

· What you and I call foxes, Ryan calls – City wolves.

· Freezebumps – No point calling them goose-bumps. Geese have feathers to keep warm.

· Still to this day he won’t use a knife. Why? “Never trust a man with a knife mummy.”

· I asked Ryan to go across the road to our local shop recently to get me a 4 pint of milk. He duly went and returned with NO milk. Why? They only had 2 litre bottles.

· Animals – Organic TeddyBears

· Ryan looked at me confused and says “Mum can you be more ocean please.” Excuse me? “Mum you need to be more pacific.” Oh ha ha… He didn’t realise he had said anything wrong, honestly thought it was the correct word and to this day we say ‘be more ocean…’

· I have got a box in the kitchen that has snack bars & biscuits in for the boys. I asked Ryan “Can you move those rice cakes please, in that box.” (meaning can you take them out for me). Can you guess what he did instead? Yes. Moved them around in that box……..

Three of his favourite sayings that are not really unique to him, he has plagiarised them from else where, but he loves it all the same:

· Not naming any fingers or pointing any names (source unknown).
· Excuse me for interrupting while you are talking (source unknown).
· TwitFaceTagram (apparently from one of his hero’s Ray William Johnson, a YouTuber).

The school that Ryan attends is in the process of building a brand new school and all the children were asked to submit names for the 6 new teaching blocks under construction. Ryan chose 'Halflife' worlds I believe. He didn't win. Instead the blocks have been named after local rivers. When he found out he said to me "But we are told not to play in the rivers. So now you are telling me it's okay to have Maths in the Twyi?

Ryan absolutely HATES having his hair cut. He has never coped with the ritual and it takes us weeks and weeks between each cut, building him up again and sometimes attempting bribery, anything that will get him through the torture as he calls it. We tried once and once only to take him to a barbers it was one of the most stressful experiences we have ever attempted and NEVER again. His dad instead cuts his hair. 

The reason Ryan's dislikes it so much is because he says he can feel each hair being 'murdered' (his words) and can hear them screaming in pain. He recently 'invented' this little song that he sings to himself as he is being tortured. The song is a mix of a calming Winnnie the Pooh meets Freddy Krueger because hair cuts should be nice like Winnie, but instead are a nightmare like Freddy (not that Ryan has ever seen the films obviously). I bet you would like to know the song....Thought so. It is to the tune of the Freddy Kruger song....

1,2 Winnie the Pooh

3,4 Piglet at your door
5,6 Eeyore's house of sticks
7,8 Tigger will keep you up late
9,10 Tea at rabbit's den

One of the things Ryan is ‘famous’ for is bottling things up and he 
particularly remembers negative thoughts which will then affect him days/weeks/months later. One day he came home and said the sweetest thing:

The past should be left in the past; otherwise it can destroy your future. Live life for what tomorrow has to offer, not what yesterday has taken away.

Saturday, 14 June 2014

True Colours

In addition to the Walk with Me poem, I also love a particular song that gives me strength and courage when dealing with Ryan’s dark days.

Cyndi Lauper’s True Colours is a beautiful simple song with some of the most powerful words that absolutely describe Ryan and his struggles almost better than anything I can write on this blog.  The lyrics are:  

You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small

But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

Show me a smile then,
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there

And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

You can see the original video on YouTube: