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“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” (Mother Theresa)

Mihai’s Story

Summer 2008

Today, with God’s help, Mihai has gained access to what Peter calls an “exclusive” club!  I am proud to announce  everybody on this  beautiful planet that  he has succeeded in passing the Baccalaureate, the Romanian high school graduation exam.There is a story behind this which I would like to share…

Mihai was born on May 16 1988. It was only after about one month and a half that I found out about his condition. Unfortunately, a very short-lived marriage broke that summer. I moved back to my parents’ home in the autumn of 1988. At the time, the medical views on Down Syndrome (Mongolism) were mostly negative and mothers were advised to institutionalise their children.

However, I do not remember being asked or urged to do something of the kind. I was lucky enough to get good advice from a remarkable neurologist who had a more updated, humanistic/ optimistic view on the beneficial effects of early intervention.

The other chance we had were the December 1989 events. Aid and information started pouring in and I took advantage mostly of the latter. I absorbed like a sponge every item of information that could be of help. In addition, I started building up contacts who, I thought, would help set up an NGO. I collected names of families who had children with DS. I realised they were more numerous than I had expected, so actually the only way to obtain legal provision for their benefit was an association. Yet, there was a generation gap, extremely visible at the time, between age groups 0 to 16 and older persons with DS, usually with very old parents. In addition, the associational culture did not seem to work, and very few people offered to participate in a concrete way – this applied both to parents and to professionals.

The times were not at all conducive to order, on the contrary, chaos and anarchy reigned, typical for such transitional periods. People were busy trying to survive and find their long lost identity. This left me more or less to my own devices and I realised I had to choose between two options: either get busy building up a DS association from scratch in a legislative void and neglect my child (institutional care was not an option) or summon all my energies and offer my son the help the system could not. The “only child”/ “single parent” family combination certainly didn’t help things. In order to create a sane emotional background, I also had to counterbalance the lack of sibling/ masculine models. I did this by creating a network of professionals, friends and a few parents in similar position. Therefore, I managed not to get isolated and my kid grew up pretty well socialised.

(It is at this time that I also decided to bracket my personal needs and, more or less deliberately, started to live what in retrospect seems a pretty “abnormal” life: different, dedicated to providing my child with the conditions necessary for his development.)

One particular approach helped me build up a strategy. I said to myself, since DS kids were supposed to mimic what they saw/ heard by means of their memory abilities, it was only normal to mainstream him in order to imitate “normality.”

In retrospect, I can see there are advantages and disadvantages to this. The former prevail and Mihai is surely an example that “normality” can be learned. Yet, no matter the culture, there are always difficulties for people who are different. Skin colour, big ears, oversize shoes – however hard you try to disguise or catch up with the Others (the majority), there will always be a tiny detail that discloses the real you, your identity. An inner voice says go back to “your kind,” stop pretending. No, Mihai hasn’t experienced too traumatising integration/ stigmatising episodes. (What about me? What about his grandmother who has not been able to accept that her grandson is different in spite of her exemplary caring behaviour?) Neither has he deliberately retreated from the “normal”/ real world. Actually, one of the earliest observations on his behaviour in mainstream education was that his capacity to cope was limited by the amount of knowledge he had been able to process and assimilate.

Daily routine, survival skills, social skills, emotional intelligence – all have been building up slowly but surely.

Another early observation, which was extremely helpful, was that language was the most relevant indicator of the above-mentioned amount of knowledge. Early intervention and early language immersion were likely to be the best ingredients for success.

Yet, when I look back, the “normality imitation” strategy could not avoid alienation and escapism in magic thinking and fantasy world. Similarly, there is a positive correlation between cognitive development and language abilities but, interestingly, if words are not also backed up by hands on experience and sensory/ rational encounter with the real world, there is a great risk they be used for building up further in fantasy world – there is such a delicate balance here –

An analogy with real vs. virtual world comes to mind – and I remember at some point Mihai tried desperately to understand (of his own initiative) to put in some logical frame of mind these “worlds” that he heard often mentioned at school, in books, while surfing on the Internet. Virtual vs. real, imagination vs. real, fictional vs. real. Where does one stop and the other start?

Overall, mainstreaming has been a successful experience. The educational stages have coincided with a transitional Romania, at times literally groping for its way. The legal framework for disabled persons was built at a snail’s pace and its implementation is still going on. The educational system itself suffered a very slow transformation. In each case the causes ranged from the authorities’ lack of experience, scarce financial and human resources, no academic education and research on the topic, to an excessively slow maturation process of the civil society, which could not act as a constant pressure factor. Last but not least, mentality – a much too generalising term – which is a set of assumptions, stereotypical behavioural and attitudinal patterns, inertial, residual thinking, has slowed everything down and was used frequently in Romania to explain causality, to justify everything that went wrong.

Mihai’s integration/ inclusion experience has passed through several stages. Even if he was born in 1988, in the communist regime, I was wisely advised to apply early intervention and cognitive stimulation in his first years of life. We started formal education half-armed, without any prior preparation except some updated books on DS. I used common sense and the advice I got from the neurologist and the psychologist. As I already mentioned, other parents were not as lucky –

Mine was mostly a solitary venture during which I had to assume persistently a variety of roles and to do regular research work to keep up the pace with the requirements. Mum, physical therapist, friend, teacher, speech therapist, psychologist, social worker – their list accounts for the energy spent and the stress that went with it.

In a nutshell, Mihai spent his pre-school years in traditional and Steinerian kindergartens. Then, the first 8 years – primary and secondary school – in the neighbourhoodschool where we followed in the steps of another DS kid. Consequently, teachers already had some experience and handled/ dealt with the situation adequately. Mihai passed the exam of general education at the end of the 8th grade with good grades and, according to the law, we were allowed to transfer to a theological high school. It was a decision I took based on my desire to find a better inclusive environment. In spite of the lack of precedence and that the school did not have a counsellor or support teachers (the Ministry does not finance job positions for high school support services in cases of inclusion), the principal and the teacher board agreed to take him on.

I shall refer now to a few benchmarks of this almost 15-year process. I have found references to most of them in specialist literature dealing with DS population in Britain and US.

The greatest gain was social acceptance and autonomy in terms of survival skills. It is acknowledged that the determining factors in the relationship between disabled children and their peer group are behaviour and language skills.

As far as behaviour/ conduct are concerned, Mihai displayed the most frequently encountered symptoms: attention deficit and then short attention span, immaturity, hyperactivity alternating with passivity, need to be in the centre of attention.

The slow development of motor, perceptive, cognitive, language and communication skills creates a delay in social competencies. Consequently, the troubles DS persons have in expressing themselves can create major difficulties in social relationships. Whereas this was less visible during pre-school and primary school years, during secondary education it became manifest in his inability to participate in the major accepting topics such as gossiping and teasing. This continued during high school years when he could not cope with intense teen talk meant to build up, among others, gender identity and roles. Peer pressure/ influence has become manifest mostly in the past two years. On the other hand, Mihai’s classmates have complained of not having enough information and advice on how to communicate better with him.

Consequently, behaviour hasn’t created significant barriers but the acceptability degree has stayed low mostly because of language. In addition, in spite of the fact that he expresses himself quite fluently in correct sentences and has a rather rich vocabulary range (higher than average), the lack of common topics and peer interests, have always built in a gap and difficulties in communication.

Similarly, in spite of a relatively great number of activities with his classmates (trips, out for a pizza) during which his peers showed availability and maturity, Mihai has not been asked to participate in repeated informal activities, and hasn’t developed a one-to-one relationship. Things would have been definitely different if a counsellor had been involved in the socialising process.

Another major gain was the intellectual development. Under the pressure of a constant cognitive stimulation, Mihai has acquired a significant number of abilities and skills above the average. At his latest assessment, his psychologist acknowledged a transformation in his rational thinking and a mental age of 14. However, my frustrations were numerous in this area. I have always been aware of his wants and needs and the lack of specialist support during the entire educational process; I tried to provide myself alternative home schooling – for seven years now Mihai has benefited from the help of a dedicated person who has done the job of a support teacher without being qualified for it. Yet, my help during his first 13 years of life and hers during the past seven could not replace an effort targeted at a typical DS educational profile. A permanent helplessness and frustration accompanied our effort: we could identify the problem, sensed correctly the solution or partially solved it, but did not have the energy, time, competencies, and specialist help to solve it adequately. This has been the major nightmare!

Finally, I consider that integration/ inclusion proper depend mostly on the school philosophy and on teachers’ values and attitudes. We have been lucky enough to be accepted by open-minded principals and well-meant teachers but, with very few exceptions, there has not been a second step towards inclusion: there were no curriculum adaptations for carefully devised educational/ learning profile, no special monitoring and assessment of progress made, very little attention paid to socialising needs.

However, we are happy with Mihai’s progress and we believe that his has been a success story so far. After almost 20 years of single parenting, I am currently engaged to be married. For the past 8-9 months Mihai has been finally in the position to have a masculine role model. I believe the timing is right and his transition to adulthood is being made easier this way. His gaining real world skills and autonomy are our current preoccupation.

– to be continued –

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