Max Toper is an 18-year-old author from London, at age 5 he was diagnosed with Autistic Spectrum Disorder.  He is a qualified Cisco Certified Network Associate, a one-time community manager and has enjoyed writing since the age of 7.  When Max’s friends and family suggested he write a book about his experiences, he took the idea to heart, financing, writing and publishing the project by himself.  When he’s not battling a complicated IT problem or resisting the urge to procrastinate while writing, Max indulges himself in PC gaming and listening to his favourite bands. 
 
The reason I am putting Max’s book on my website is that he represents one of the many young people we have supported and I think  he can be a role model for others who may feel there is no light at the end of the tunnel.  Max’s book shows all of us that there is always hope even through the challenges.  Max kindly agreed to write this blog for us.  Here is a link to the book:https://www.amazon.co.uk/Why-Still-Here-Max-Toper/dp/1800491352/ref=sr_1_1?dchild=1&keywords=why+is+he+still+here%3F&qid=1610394391&quartzVehicle=842-813&replacementKeywords=why+he+still+here%3F&sr=8-1
 
Wouldn’t it be great if we succeeded every time?  If we didn’t need help?  If we were self-sufficient?  The idealist in me wants to believe that—at least partially.  Fact is, we don’t always get it right, nor do we always succeed.  Let me be clear though, success is different for everyone.  And trying to find your definition of success without support from others is an unbreakable burden.  What do I mean by that?  Well, by choosing to stand alone, you place yourself in isolation, which often leads to a harsh plummet into a desolate existence.
 
The more time you spend cut-off from the world, the harder it is to pull yourself back up.  Having spent years of my life alone, locked in rooms.  It's hard to trust others, to interact with others, and throwing up barriers can actually make you more vulnerable.  I’m lucky to have a strong support network of family and friends, but when I needed it most, I didn’t leverage it.
 
I believed asking for help would make me weak, or that people wouldn’t understand my problems.  Not only that, I brushed the advice of others who were actively involved in those very situations aside.  In doing so, I left painful feelings unaddressed, and neglected suggestions that could have led to a much more positive outcome for me.  At this point, you could call this blog post the same old, “just ask for help.” Now I prefer to look at it differently.  Most recently, when I worked on my book, “Why is He Still Here?”
 
I took the lessons learned from my mistakes onboard, in the best way I could.  Projects like publishing a book require a lot of resources, and this time I truly used every resource available.  It wasn’t a clean and easy path, there were pitfalls, but with the right editors on my side, and my listening to beta-readers, the book came out far better than it ever would have if I sealed myself off.
 
That’s just one minor example of how accepting help from others and taking their advice onboard can yield great results.  Of course, not all advice is good advice, it’s important to recognise toxic individuals; because people who want to take advantage of you do exist.  Now I’m not saying be paranoid; that’s what I did.  And toxic individuals took advantage of my paranoia.  Point is, things aren’t black and white, the right “advice,” is different depending on who you are.
 
Advice and the support of others are resources for developing resilience.  But I’d caution against depending on such things, because it’s your decision to implement that advice and look out for yourself, no one can do that for you. 

By Richard Marcus, Head of Development, United Synagogue
 
When Ruth Birnbaum approached me, I offered to write and share some of our family’s experiences on her website to offer an insight into the lives of those living with disability and how people can help become more inclusive.

My perspective is as a father of a gorgeous 7-year-old ‘Z’, who charms everyone she meets with her wit and love of life.  Z was born three months premature with her twin brother; both tiny 1kg miracles.  Within hours, it became apparent that she had contracted meningitis and the initial days and weeks were touch & go.  We were told that due to the infection, she had Cerebral Palsy but that it would not be until she was older we would know the severity.  The following few years saw a series of operations and assessments with all the anxiety that brings and now we are facing the challenge of trying to ensure that she has the support services in place to maximise her potential.

Having a daughter who is currently wheelchair bound with various additional needs leads to many challenges.  I want to share three areas that impact on our family’s day-to-day life – Appointments, Access and Isolation.

Being a parent of a child with disabilities can often feel overwhelming both emotionally and practically.  On the emotional side, you cannot help but worry about their future – How will they develop?  Will they be able to live independently?  Who will look after them? – On a practical level there are so many appointments.  At our last count, we have 11 discrete teams involved with Z, which each require appointments and follow ups.  That means that almost every week Z misses some school and either my wife or I have to take her to an appointment.  I’m fortunate that my employer has been very understanding but I know other dads who due to work pressure cannot share the burden.  We are truly grateful for this care but it becomes a treadmill taking time and energy.

Planning day trips takes care due to access issues: it’s not as straightforward as just picking somewhere you want to go.  We have to ask ourselves various questions, from the obvious – is the site wheelchair-friendly?  What equipment we will need to take? – to the less obvious regarding toilet facilities.  A disabled toilet may provide some extra space but if the person cannot use a regular toilet, they need different changing facilitates.  Z has made great progress so this is not such an issue for us, but for many parents with disabled children that have outgrown a baby changer the only option left is to change them on the floor – public toilet floors are not a place you want to lay someone down.  To find out about places that have changing spaces you can visit the campaigning website www.changing-places.org.

The final area I want to highlight is isolation.  As a family, having a child with disabilities can be isolating; you can feel disconnected from your community.  A simple example of this is that we are fortunate that Z is in mainstream schooling (with a wonderful LSA) and that the school very kindly allows us to park on site (a dream to many a parent).  However, the downside is that pick-up is away from other parents so all the playground chatter and connections are missed.  There are some places that we know we just cannot easily access so we are unable to attend.

Life presents challenges for all of us.  I would like to offer some advice.  To any families living with disabilities, do seek out the many support networks your community offers.  It provides a special opportunity where we can share experiences and help each other.  As a family we have over the past seven years had support from several charities.  For friends of families with disabilities, please be proactive and if you are able to help, make the offer explicit; e.g. saying: "On Monday I know you have appointments most of the day let me make your family dinner" is much better than saying "Let me know if I can help." And, of course, be aware that not all disabilities are immediately visible.  Be persistent in keeping in contact with your friends.  Life can be so intense that families with a child with a disability have little time for themselves and making time to catch up with friends can be difficult.  So if you are reading this and have friends with children with a disability please make the time to connect with them.

​Author: Nathalie Dick, Information Officer, Network Autism Organisation: The National Autistic Society Date of publication: 29 March 2018

It has been estimated that more than half of the world’s population are bilingual and the number of children being brought up as bilingual in the UK has increased over the last fifteen years.  Currently, 25% of children are classified as being of ethnic minority origin and 16% of children in Local Authority primary schools are believed to use a language other than English.  Fraser Lauchlan, et al, in his article (quoted with the author’s permission), discusses simultaneous bilingualism, which describes where a child has acquired two languages prior to the age of 3 years.  Research appears to indicate that there are definite advantages to bilingualism.  These can be summarised as follows:

• Bilingual children are better than their monolingual peers at selectively attending to important information and ignoring misleading cues (this is known as cognitive control).  As bilingual children are constantly sorting & filtering out extra perceptual information, since, for every object or action, bilingual children assign two words, or labels, one in each language that they speak, then they have to develop the ability to choose the appropriate label.  Thus, bilingual children nurture their capacity to focus on relevant and appropriate information and inhibit their attention on the information unrelated to the context.
• The skill inhibitory control has shown to be a key factor in the ability to perform a number of different cognitive tasks and, as a result, they would have a superior ability to use selective attention (or cognitive control).
• Bilingual children were found to be more advanced in performing a series of number tasks, especially on those that required high levels of selective attention.  This was because of the meta-linguistic skills that enable them to perform better; mainly their ability to self-correct and, perhaps become more confident, enhanced their problem-solving approaches.
• Creative thinking appears to be less restricted in bilingual children.  
• The ability to use knowledge about a language has shown to be better in bilingual children.
• Conceptual transfer is where a bilingual child uses the understanding they have of a concept to help them understand a similar concept in another language.  Conceptual transfer has been described as a ‘dual iceberg’.  One can see the separate use of the two languages ‘above’ sea level, where children will switch from one language to another easily.  However, below the surface, there is a deeper transfer of the languages at a conceptual level, which can ultimately help bilingual children to learn.  Conceptual transfer explains why bilingual children find it easier to learn further languages when compared to monolinguals.  

Whilst most of the scientific literature has focused on the advantages of bilinguals, there is some evidence that it can lead to the following disadvantages:

• 5% of children stammer when they are learning to talk.  However, research has shown that bilingual children can be more prone to stammering because of the impact of learning two languages.
• Bilingual children can have a reduced vocabulary in one or both of their languages when compared to the normal size of vocabulary for a child of their age.  This may be expected given that the bilingual child is learning two labels for every object or action that they observe and so there is the possibility that such a complex task may affect the development of their vocabulary compared to the situation of them learning only one language.
• It has been argued that bilingualism can be risk factor in in the onset of selective mutism.

Implications

The advantages of bilingualism may be confounded by other factors beyond one’s control; e.g. low socio-economic status, reduced social circumstances, etc.  However, bilingualism does not exacerbate the negativity of these experiences.

Educational Psychologists undertaking standardised assessments should remain very cautious when using standardised cognitive ability tests to assess bilingual children and if they do, they should interpret the results very carefully as children can be disadvantaged by the sub-tests that are timed; especially on those tests assessing language skills.

Deciding to move from bilingualism to monolingualism has the effect of changing the child’s environment significantly and may mean that they can become marginalised within their own community, so advice must be carefully considered. 

There are no strict rules about how to deal with every single set of circumstances presented which is why each case must be considered individually; e.g. should a dyslexic child concentrate on developing the literacy skills of the language being taught in school?  Will an autistic child cope and be comfortable with the learning of two languages? 

It would be interesting to see what experiences other people have had with regard to this challenge.

Ruth Birnbaum

September 2014

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