Lille Silvia

Af Elisa Nicolato, 23. marts 2005

First of all, I apologize for writing in English, but if I had to present our story struggling with the Danish spelling, it would take me a couple of years and that's definitely beyond the deadline! Nevertheless I wish I had a bit longer time to deliver this presentation because at the moment we stand in a crucial phase in our attempt to establish an institution-based ABA-intervention for Silvia and it will take few more weeks to know the results of our efforts.

I also apologize in advance for giving quite a detailed (in fact very detailed) description of our story. But I remember that few months ago, when I was reading the “Personlige beretninger” on ABAforum’s pages, I was really hungry for details and I found them very useful. So maybe there is somebody out there (maybe some new family) who “wants to know it all”.

So, let's start from the beginning.

Our family consists of me, Elisa Nicolato (another Italian!), Jacob Krabbe Pedersen (very Danish) and our little, wonderful Silvia, 21 months old. We live in the middle of Aarhus.

Since the very beginning, I've always felt that Silvia was "different": I was regularly meeting mothers with babies as old as Silvia (mødregruppe, or something like that) and as a consequence I was regularly thinking that Silvia was not developing like the other babies. I actually spent a fortune on very expensive baby toys: after every mødregruppe-meeting I was always running to the "best" toyshop, feeling very guilty for not being able to stimulate Silvia properly! The result was that our house became a sort of "wonderland" for all the other kids, except Silvia, who couldn't care less and kept putting in her mouth and sucking the same old "rangle" (25 kroner worth, max.).

I was also constantly talking about my worries with our sundhedsplejerske, but, understandably enough, I was always told that I shouldn't make comparisons with other kids and that Silvia was following "her own tempo".

In fact, recently I found a list of questions that I made for our sundhedsplejerske when Silvia was 8 months old and it goes like:

* I cannot get eye contact, is that normal?
* Silvia doesn't react to her name at all,
* She is not scared if she's left alone in a room or with strangers,
* She doesn't show any preference for me or her father as opposite to other people …
and so on.

However, when Silvia was 10 months old (April 2004) we agreed with the sundhedsplejerske (in fact I believe she was a very clever one) that there were some problems with Silvia, at least motor problems, and so we started a number of medical investigations.

Struggling with various waiting lists, it took about 6 months to go through an eye doctor, an ear doctor, Skejby Neurologisk Afdeling and an MR scanning. The only neat result was that Silvia was in fact very far-sighted (+7,+8: she has been wearing lovely little glasses since June 2004) but also that this fact alone couldn't explain her slow motor, cognitive and social development.

Silvia was also referred to the "Småbørnscenter" here in Aarhus (and this bring us to November 2004) which was continuously named as “the right place” where they would know what to do for her. Well, the offer consisted in giving psychological help for me and Jacob and providing Silvia with 1 hour of musikterapi per week (?!?).

We took the offer, but we were also completely puzzled!

During the previous months, besides learning to accept and cope with the fact that Silvia was a child with handicaps, we had little by little started to search by ourselves about what the problem could have been, also because no matter how much we asked, we were never given clear answers by any of the doctors we visited. It didn't take long to realize that Silvia's problem sounded a hell of a lot like autism, and that ABA was the kind of intervention we wanted for our beloved child: God bless Internet and ABA-forum web pages! In fact we became more and more convinced that, given the "symptoms" of Silvia, ABA was the right intervention for her, no matter what the diagnosis could have been.

I may also add that, on our own initiative, we consulted a neurologist, and after 3 minutes of observation his evaluation of Silvia was “mental retardation +autism” or “mental retardation+some attention disorder”. Hereby he referred Silvia to the Børne- og Ungdomspsykiatrisk Hospital (eventually).

We also tried to discuss with the neurologist our plan of establishing an early intensive behavioural intervention, and his reply was quite shocking. He told us that according to his 30 years of experience with handicapped children, intensive programs were risky and that the effects on the entire family and the child might be quite disastrous in the long run. Plus he wanted to alert us about the risks of believing blindly the literature on early intensive programs, which, in his opinion, is narrow if not biased, and finally, he felt like reminding us that “life goes on”, in spite of Silvia. The emphasis was all the time on the possible disruptive and dark effects of autism on our lives and not a single positive or comforting word about how to help Silvia was uttered at all.

The result of this “illuminating” meeting (and of all the international literature we kept reading) was that we ended up being more and more convinced and eager about starting the ABA intervention with Silvia, although we became much more careful and diplomatic when talking about our project with “public” or “faglig” people.

In the meanwhile we also got in contact with Martin and Cecilia Brynskov and since the very first moment we met them they never stopped to provide us with information, suggestions, support, and any other kind of practical help in order to organize the ABA-project.

Moreover, we were so eager to help Silvia that we also started some sort of “do-it-by-yourself”, “super-low-intensity”, totally unprofessional ABA-like-training without any sort of supervision, except the precious suggestions coming from Cecilia (who I kept bugging regularly…).

The amazing thing is that Silvia was in fact reacting well and we had definitely the feeling that it was working: there was no doubt that we were able to get more in contact with her!

It was now December 2004 and somehow time for “a little bit more action”, so we got in contact with both TIPO and NOVA in order to hear if they were willing to offer us supervision. It took a couple of months of email exchanges, but eventually we got a positive reply from TIPO.

In the meanwhile, we started to think about which sort intervention would be practically feasible and suit us best. Instead of aiming to a home-based intervention, we decided to try to take advantage of the resources available from Aarhus Kommune, which are not bad at all in comparison with other kommuner, and coordinate them into an institution-based intervention.

In fact we spent quite a bit of time “preparing the ground” for the so-called “koordinations- og visitationskonference” (scheduled in January 2005), which, here in Aarhus, is a meeting where in collaboration with all the relevant people, the child gets “classified” (horrible word) and, more importantly, it is established how many støtte-timer are assigned to the vuggestue/børnehave hosting the child.

Before the “visitationskonference”, we informed our own vuggestue (which Silvia attended since August 2004) about our plans. In fact Cecilia was so kind to give a presentation for them about ABA pedagogical principles and practical implementations in “normal” institutions.

Unfortunately, we all agreed that our vuggestue was way too small to host optimally an ABA project: it was impossible to find a suitable “training room” for a sufficient number of hours per day. However, they were interested in ABA and willing to help until we had founded a proper institution.

We also spoke with the (sceptical) people at the Småbørnscentret about our intentions, [always trying to sound very sensible, positive, informed and realistic about our “expectations” on ABA]. We really tried, “stille og rolig”, to create a constructive and interested atmosphere around Silvia, for example by delivering ABA literature and, more effectively, by showing the small but important progresses that Silvia kept doing as a result of our ABA-like training.

In fact they couldn’t deny the evidence and, although carefully, they recognized that Silvia was benefiting of our efforts.

Furthermore, we wrote a “bilag” to the documentation for the visitationskonference, where for the first time we “officially” spelled out our wishes for Silvia.

All this preparatory work (and the fact that here in Aarhus, “ABA is in the air”) resulted in a “very pleasant” visitationskonference where the attitude was overall positive and all the people involved supported our plans in front of the present public authorities.

Silvia was granted 27 støttetimer (which is normal, here in Aarhus, for children with Silvia’s kind of problems) but most importantly, we got “permission” from the kommune to implement the ABA-program in a normal institution and to “use” the støttepædagog exclusively for the purpose of becoming the training leader. We also got in contact with a pædagogisk konsulent who was meant to help us to find the proper institution.

Of course, miracles do not happen that often so the (big) issue of getting economical support for supervision was rapidly dismissed, as we expected. But nevertheless, we were happy for having established some sort of cooperation with the kommune, which was agreeing to provide the infrastructure, if there was an institution willing to host the project.

We were also granted 15 “aflastning” hours, due to the fact that both I and Jacob are working full time and that Jacob has to travel a lot (he commutes between Aarhus and Odense every day). This was very good news, because it was giving us the possibility of hiring a couple of hjælpetrænere.

It was now February 2005 and we started our rather difficult “institution hunt”. We decided to look only for integrerede institutions (vuggestue + børnehave) so that Silvia wouldn’t have to move out when turning three. Moreover, we thought that the presence of older children would offer much better possibilities for “generalization” exercises.

We wrote down a list of 13 “normal” integrerede institutions (vuggestue + børnehave) located not too far away from were we live (centre of Aarhus) and we visited each one of them.

At each place we gave a brief presentation about ourselves and ABA, we delivered some ABA material (the ABA-pjece and 2 more selected articles downloaded from ABA-forum webpages) and we agreed to talk again together after a couple of weeks, so they could discuss a bit and find out if they were interested to hear more about the project.

This lengthy and exhausting experience brings us to these days (March 2005). We did get a positive reply from three institutions and the 30th of March, with the “blessing” of the kommune, we will hold a more “professional” and “official” information meeting with them: Cecilia will give a presentation on ABA, we will try to answer to all their questions and, after the meeting, they will have to make up their minds. Needless to say that we are preparing the information meeting very carefully and that we hope for the best. (If you reached this point of this boring report, cross your finger for us!)

But if none of the institutions will welcome Silvia, we will start the ABA program anyway, under TIPO supervision, using the current vuggestue. Although this will not be the optimal solution (as mentioned before, Silvia will not have enough training at the institution), we cannot wait any longer to start with “the real thing” and in the meanwhile, we will keep looking for interested institutions, this time outside the center of Aarhus.

At the moment we are also quite busy with interviewing psychology students and pædagogstuderende who answered our ads for becoming hjælpetræner: there are quite a bit of them and there seem to be good chances for putting together a good team!

So, this is our story until now and after all these months of preparatory work we are really burning for starting the intensive intervention under the proper supervision.

Silvia still doesn’t have a diagnosis and although in April she will be examined by the Børne- og Ungdomspsykiatrisk Hospital, it is not clear when or if she will have one.

It might sound like blasphemy to you all, but we are actually hoping for a diagnosis of infantile autism: that way it might be easier, at some point in the future, to obtain economical support for an ABA intervention. Because we are absolutely certain that ABA is the right intervention for our little Silvia: we are reassured about it whenever she looks intensely at us and smiles, or she says “na-na” or “da-da” , or she claps her hands or waves “hej hej”… whenever she does any of the little, but precious things that she couldn't do but has learned since she has been taught in the right way.

Tilbage til oversigten over alle tekster om Silvia