Ruth Birnbaum Chartered Educational Psychologist
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who will look after my child?

21/2/2019

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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.

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resources to support autistic pupils with exams

4/10/2018

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​Author: Nathalie Dick, Information Officer, Network Autism Organisation: The National Autistic Society Date of publication: 29 March 2018
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Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm

16/4/2016

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from the book Ten Things Every Child with Autism Wishes You Knew, 2nd edition Bronze Medal in Psychology, ForeWord Book of the Year Awards
Reprinted in its entirety with permission of author
S ome days it seems the only predictable thing about it is the unpredictability. The only consistent attribute—the inconsistency. Autism can be baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.
Autism was once labeled an "incurable disorder," but that notion has crumbled in the face knowledge and understanding that increase even as you read this. Every day, individuals with autism show us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is a complex disorder but for purposes of this article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front-of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.
Here are ten things every child with autism wishes you knew:
1. I am a child.
My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I meet you, but you’re more than just that, aren’t you? 2
As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I "can do it," my natural response will be, why try?
2. My senses are out of sync.
This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me.
My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up.
And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.
3. Distinguish between won’t (I choose not to) and can’t (I am not able to).
It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear "*&^%$#@, Jordan. #$%^*&^%$&*." Instead, come over to me, get my attention, and speak in plain words: "Jordan, put your book in your desk. It’s time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.
4. I’m a concrete thinker. I interpret language literally.
You confuse me by saying, "Hold your horses, cowboy!" when what you mean is, "Stop running." Don’t tell me something is "a piece of cake" when there’s no dessert in sight and what you mean is, "This will be easy for you to do." When you say, "It’s pouring cats and dogs," I see pets coming out of a pitcher. Tell me, "It’s raining hard."
Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.
5. Listen to all the ways I’m trying to communicate.
It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for 3
body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there.
Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
6. Picture this! I’m visually oriented.
Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn.
Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations.
I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.
7. Focus and build on what I can do rather than what I can’t do.
Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how "constructive" you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.
8. Help me with social interactions.
It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, "Are you okay?"
9. Identify what triggers my meltdowns.
Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A pattern may emerge. 4
Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me.
My behavior may have a physical cause. Food allergies and sensitivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.
10. Love me unconditionally.
Throw away thoughts like, "If you would just—" and "Why can’t you—?" You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.
Three words we both need to live by: Patience. Patience. Patience.
View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people?
I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go.
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© 2012 Ellen Notbohm
Contact the author for permission to reproduce in any way, including posting on the Internet.
Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm’s books and articles have informed and delighted millions in more than twenty languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Bronze medal, Honorable Mention and two finalist designations, two Mom’s Choice Gold Awards, Learning magazine's Teacher's Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms, conferences and websites worldwide. To contact Ellen or explore her work, please visit www.ellennotbohm.com
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The Nature of Bilingualism, based on an article by Fraser Lauchlan, et al published in Educational & Child Psychology (vol. 31, no: 2, June 2014)

3/9/2014

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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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A Parent's perspective

13/6/2014

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My daughter forwarded me this blog from a friend of hers' whose son has Nystagmus (an involuntary eye movement condition). I appreciated her honesty as she writes how difficult it is to advocate for her son's educational rights in the classroom without alienating the teacher.
      As a parent or educator, how do you think parents can feel more empowered to advocate for their children in the classroom, We will post your suggestions so watch this space.!!!! In the meantime we hope Elisheva’s perspective is also appreciated by teachers. First published on www.elishevasokolic.com:
Start Listening
By elishevasokolic 

I have never felt so helpless in front of another human being.

I have been a child, strapped into a highchair or a car seat, wriggling for freedom to run and play. I have been a teenager, full of angry hormones, shouting and demanding independence and insisting I know best, met with inflexible rigidity. I have been a woman, crippled with labour pains, fighting against my own body for release and comfort. But standing in front of you, I have never felt so acutely another persons hands wrapped casually around my heart.

You are my sons teacher. But I am his mother. To you, that title may not mean much. Yes I gave birth to him, but I do not have any qualifications or certificates to prove my worth. I don’t have years of experience or references from children now grown. I don’t have a shiny laminated badge with my credentials, and I can’t issue you a formal letter with expectations or give you any funding or resources.

But that title. That word. Being a mother to that little boy means I know. I know the obstinate way he mutters under his breath crossly when he’s done something naughty, I know that as soon as we walk in a room he will be counting the lightbulbs, (including which ones are faulty.) I know from how far his head is tilted to the right how much difficulty he is having seeing something, and I know from the subtle head wobble when he is too tired to try. I know when his frustration at being left out or overwhelmed is causing naughty or difficult behaviour, and I know when it’s just a symptom of the dreaded threenage years like any other fully sighted child.

You are his teacher. But I am his advocate. I’m the only one he has. And it’s a ferocious balancing act throughout which I’m scared nearly all the time.

Scared to argue my case, because I know that we’re paired together my son and I. Who knows how I could unintentionally offend you and without any malice on your part, have it taken out on my helpless child? Frightened of not saying enough, and leaving him without the same opportunities that so many other children and parents take for granted. Practising with my husband in the morning before I approach you, trying to find that elusive tone of voice, or expression that will make my words appeal to you. Hoping that you will put aside the issues of resources and check-boxes, and just look at this mother who has no pride, and would crawl over hot coals if it meant that you would believe she isn’t hysterical, she isn’t trying to upset you or make your life harder, she’s just acting on the most basic instinct on the planet, that of a mother protecting her young.

I am one of thousands of mothers whose child needs that bit of extra help. We shouldn’t have to write letters or shout loudest or cry tears to be heard. We shouldn’t have to pick our battles and decide which parts of our children’s school life aren’t as important for them to access if it turns out that we can’t fight for them all. We certainly shouldn’t have to feel scared that we’re going to be ignored or condescended to or fobbed off with excuses when we summon up the strength to stand our ground against the system.

But in a world where these situations are often the sad reality, please acknowledge how it takes immeasurable courage for me to approach you. I am the advocate for my son. I’m the only one he has. For the time being, I am not only his eyes, but also his voice. And I’m asking you to stop simply hearing me, and start listening.

Elisheva Sokolic is currently working as Features and Books editor at DRAFTED Magazine, as well as writing freelance. She has a 3 year old son with a Visual Impairment, and splits her non-writing time between correcting grammatical mistakes on the Internet, and spelling her name out for people over the phone. Catch more of her writing at www.elishevasokolic.com
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    Ruth Birnbaum

    I am by no means a 'techy', however I feel that I have an opportunity through this website to bring to your attention some articles and information that may be interesting and relevant to parents looking for the service of an educational psychologist. I hope you find this blog interesting and I look forward to receiving your comments and feedback too!

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