Aspergers

ruben
My son Ruben was diagnosed with Aspergers Syndrome at the age of 4.  Having a child with Aspergers is at first, quite perturbing. I guess any clinical diagnosis is. This is my tale as the father of an “aspie”. Maybe it helps someone out there.

Diagnosis

Diagnosis didn’t come easy. Especially when he was young. When Ruben was 2 years old, we realized that his language abilities were simply not coming along the way we expected it to be. When he entered his first kinder-garten type school at 2½ years of age he really did not say much more than the basic “i want”, “mine”, “hallo” and a few other two-word sentences.

However, typical “aspergers obsession” was already apparent. He could say the word “fan” in six different ways and was completely obsessed with fans. I spent more time shopping for fans, and building fans out of old electrical DC motors and battery packs than anything else. When visiting at friends, he would instantly get attracted to the biggest baddest sharepest-blade  fan in the place and pretty much play with it for the entire visit. You couldn’t remove him from it with a pickaxe if you tried.

My wife (a qualified Montessori teacher) was already worried, knowing which developmental milestones and sensitive periods was age appropriate for him. He pretty much missed all of them, except for mathematical interests.

Initially we thought it was simply slow language development. After 18 months in a local Montessori school with no real progress in his language development, we approached the proffessionals. Test, after test, consultation after consultation with everything from speech therapists to occupational therapists ensued. We were told that he has low muscle-tone, poor fine-motor skills, and that his speech is underdeveloped.

Well, we knew that.

Eventually, after consultation and interviews at the WITS Centre for Language and Hearing Impaired Children we were referred to a developmental psychologist who made the diagnosis.

The Centre

The Centre for Language and Hearing Impaired Children offers specialised treatment for kids with language and hearing problems, and they had treated many Aspergers children before. We enrolled Ruben, and he was introduced into a rigorous regime of speech, occupational and phsyio therapy. Because all the therapy happened at the Centre to him – it was just another day at school.

We were also advised at this point by the Centre, to switch our home language from Afrikaans to English, as a single language would be the best for him to grasp.

We could immediately see improvements, his language abilities improved drastically, and he became more agile.

However – after nearly 18 months of treatment at the Centre, the teachers and therapists started to recommend that we medicate Ruben to deal with his “attention deficit” issues. We tried Rispadol for a few weeks based on a prescription by a specialist. What a disaster… Ruben regressed, became whiny, sleepy and moody all within the space of 10 minutes.

I feel that teachers grab to easily at the “medicate for attention issues” straw, because it makes children more manageable. The pressure at the centre to medicate continued, and eventually I blew my lid and decided to remove him completely. The Centre does marvellous work, but their bedside manner requires a lot of work. The Centre was also an extremely noisy and busy environment which doesn’t help a child with Auditory Sensitivity.

Educating  an Aspergers child

Managing the education of an Aspergers child is actually very easy, as we found out — if you’re willing to go a little bit “off the wall”.  Simply keep them involved in their interests, and if the subject at hand is not their interest, try to combine it with their interests. For example, Ruben hates drawing, cutting and coloring in pictures. Give him pictures of fans or computers to cut and color and he’s there like a bear. Mission accomplished. Montessori directresses call this technique “directing” and practically it does work.

The problem is, to find a place where your Aspie will have this kind of attention and care. Beware of teachers and therapists recommending Ritalin, Rispadol or any other kind of medication just off the bat. Give it a try, and see if it works. Some of them respond well, and some don’t.

The simple fact is that Aspergers is a genetic syndrome that cannot be “medicated” away. We have found however, that Ruben does respond well to Concerta, and that it does keep him more focused and concentrated. It does not remove his Aspergers, so don’t go into it with that mindset. It helps. That is it.

 

Finding the right environment

After “The Centre” we found a Montessori school called “New Beginnings” where the headmistress was a proponent of “Integrated Learning Therapy”. The school was apparently capable of catering for children with special needs, and she gave us an ILT lecture and (yet another) assessment on the spot. The headmistress turned out to be a complete psychopath, and Rubenand us endured 6 months of agony. All I can say is that this woman was utterly insane.

We had Ruben re-assessed again, because by this time we were confident that he might be able to join a mainstream school. “Viv” was simply an angel. By this time (6 years of age) Ruben was testing average on most things, and advanced in maths and reading. His social skills, however have and probably will always be lacking, and his sensitivity towards busy and noisy environments had not yet diminished.

The Studio of Learning

These two women should actually have wings. They are complete angels. The Studio is a small bridging environment where a maximum of 6 children per class are enrolled. Claire and Ria are competent, confident and gentle with the kids. Ruben is flourishing at the studio and has now started his second year, doing Grade 1 at the age of 7. Socializing is still sometimes problematic, but he gets along well with most children and has made a number of friends.

Home Tutoring

After a while, greed, the leaving of one of the founding members of  The Studio of Learning, and yet some more random changes — we settled on hiring a permanent home tutor for Ruben. He learns at home, the stress of the “school run” and other external interferences is now gone, and he is flourishing even more than before. We tried the South African “Clonard Curriculum” as is taught to the children of travelling diplomats and other random people. Frankly, the cost is about the same as a school, and if you include travel, and the time saved, it’s simply a no-brainer. But it didn’t quite work out, as so many excursions before.

Clonard entails a lot of paperwork, and writing, and still some very “set” minds in their teaching methodologies and the actual teachers themselves. In fact, even after we explained Ruben’s serious motor skill problems to them, they still failed his English course because he had assistance from his tutor to write things down, and they wouldn’t accept a typed version.

Once again, we had to make a change:

Ruben has been on an American curriculum now for 18 months, run by Laurel Spring (an American K12 program) and their standards are high. Ridiculously high. But it is all online, and he can use his PC to do 98% of his school work. The folks at Laurel Springs are also ridiculously helpful and interactive. Frankly, a 98% average across all his subjects has made us, and him very proud, and the curriculum works in a sensible and digestible manner, that creates visual and tangible progress.

We did have to call for a superhero, aka “Phia Longridge”, also known as “The Tutor” to guide Ruben in his work and make sure that he completes his tasks, and learn about the world beyond the academic and laptop, and get used to the new study methods.

Yes, now you will say “what about socialisation” and so on… Not an issue. Forced association is not socialisation.

Ruben has many friends from extra-curricular activities, but always gravitates towards his “online” friends. I have created a complete geek. Yay.

 

So, what are the tips?

I am certainly not a qualified expert, but I can relay some of the things that I’ve found to be important after having gone through 7 years of Aspie-dom.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Conclusion

Ruben is 7 11 thirteen years old now, and coping very well. He’s made a number of friends, plays wildly and is an extremely happy, and caring child. His school work is on standard (even though he still hates drawing and coloring in) and his maths and writing skills are excellent.

His obsessions have moved on from fans, to alarm systems, to passwords and security codes on his computer, to his laptop, to security cameras, handheld cameras, to electrical experiments and any other gadget that might hold interest.

He is now an avid gamer, and enjoys MineCraft (the world’s best virtual Lego-set) so much that I have to drag him away from learning about building XOR, NAND, and AND gates. He bugs me for ssh login details. He asks me how to do MySQL (things).

Actually, he sounds a lot like I was at that age…

I wish other parents of “little professors” the best in their journey.

Author: roelf on February 10, 2009
Category:
9 responses to “Aspergers”
  1. Gerhard Bezuidenhout says:

    Hi Roelf

    Baie dankie vir jou storie wat jy met ons deel. Ons (ek en my vrou) het begin vermoed dat ons seun, Roland (nou 13 jaar oud) Asperger’s het. Al die dele van die legkaart het nou eers inmekaar geval en nadat ek die “simptome” gelees het weet ek dit vir ‘n feit. Miskien die rede dat dit so lank geneem het om die probleem te identifiseer was dat Roland baie intelligent is – iets wat hom “punte-gewys’ baie goed laat doen het op skool, dit het miskien ons fokus van die ander simptome weggelei. Hy was vroeg reeds gediagnoseer met swak spiertonus (fisies is hy nogal “akward”) en het terapie daarvoor (onsuksesvol) ontvang, hy het geen vriende nie (kan sosiaal glad nie aanpas nie- die onderwysers se hy is doodstil in die klas), sy taalgebruik is baie goed, maar hy sukkel met die nie-verbale kommunikasie en neem alles letterlik op (hy kan ook nie leer as hy nie iets neerskryf of lees nie- ek dink die enigste rede hoekom akademies baie goed doen, is omdat hy ‘n baie goeie geheue het), hy is verskriklik hardkoppig, kan humeurbuie kry, het ‘n ongelooflike fassinasie met Sokker (ken al die klubs en spelers en al hul geskiedenis), is tas-, gehoor- en ligsensitief. Hy doen baie goed in skaak (hy speel vanjaar sy derde toernooi vir Suid-Afrika, was verlede jaar by die World Youth Chess Championship die beste speler van die hele Suid-Afrikaanse span en speel vanjaar eintlik nog op o/13 ouderdom vir die o/16 Suid-Afrikaanse Olimpiade Span- was Bobby Fischer nie ook ‘n Aspie nie?). Ek begin opmerk dat sy probleme wat sosialisering betref baie erger word en hy hom totaal onttrek by die skool en ook met sy peers- hy verkies om met jonger kinders te “speel” , want dan kan alles domineer. Hy begin al hoe meer take en vrae in toetse misinterpreteer, onderwysers verstaan hom nie en gee hom swak punte vir take, ens. hy moet volgende jaar graad agt toe en ek dink daar le ‘n moeilike pad vorentoe vir hom. ons wil hom toerus vir dit wat wag op hom. Hier is my eintlike vraag: ken jy dalk iemand wat ‘n spesialis is in die diagnosering en “behandendeling” van kinders/ tieners met Asperger? Roland is genoeg gespot en het genoeg seergekry in sy lewe.

    Groete

    Gerhard

    • vincenzia says:

      Hi Gerhard,

      Ek het gehoor van n Dr in Bloemfontein wat baie sal kan help. Sal die inligting vir jou soek en stuur.

      Groete Vincenzia (Roelf se vrou)

  2. vincenzia says:

    http://snap.org.za/
    Kyk ook dierna

  3. dagelf says:

    Ek wil net een ding se: F)!@((*k medisyne. Seriously. Psychiatrists kan almal in die hel gaan brand.

  4. Marinda Opperman says:

    Sifting thru all the info I can find, trying to get help. My son (now 19) was diagnosed when he was 3. I did EVERYTHING Roelf mentioned, except for one thing….I overprotected, and today it’s bearing fruit – very, very sour fruit. I was afraid of what would happen to him if “the world found out about him”. It was strange when, at age 2yrs 5mnths, he could hardly speak, but give him a newspaper (or any printed item), and he could read it, out loud, Afrikaans and English! How stupid can a mother be??????????? But if you love your child, you will do anything and everything to protect them. I just went completely over-board.

    I Also home-schooled for nearly 10years, but realized that he had NO interaction with other children (again mother being over protective), so he enrolled in a private school in 2012. Because of the incorrect subject choices, he was “put back” two years so that he can catch up on math and sciences. He lives for his math and sciences (life science & physics) and averages in the 80’s. He will be doing grade 12 (matric) next year.

    Can anybody help me with a website(?), blog(?), or anything/any place where he can chat to other aspies (hate that word!!) Maybe somebody out there can give us advice on eating habits. He ate every kind of fruit & veg when he was little, but suddenly, at age 7, stopped….”coz it feels funny in my mouth”.

    God bless each and every parent, grand parent, brother and sister of a child with Asperger’s.

    • roelf says:

      We also had some serious worries about whether to tell Ruben about his condition, and how we would treat other people in the world, when they asked.

      The simple answer has been that honesty is the best policy. But you don’t need to share if you don’t feel like it. We’ve taken a careful balance between sharing with “EVERYONE” versus sharing with “PEOPLE THAT MATTER”.

    • roelf says:

      Wrongplanet.com might be somewhere he can connect, but do look at it yourself first, and see if it may require some moderation.

  5. Xorgadget™ says:

    Heh I find this Interesting ☺

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