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Tuesday, February 1, 2011

Pearl Update

In my last post I hinted at explaining some of the issues with Pearl's schooling so, having an opportune moment, I will do just that.

At the beginning of the school year last September we had an AVS (auxiliaire de vie scolaire), which is a teaching assistant for Pearl to aid her in the classroom. As with anything it was difficult in the beginning. New surroundings, routine, and faces made it all a bit overwhelming at the outset. But she was a little trooper and school soon became just another thing she had to do. Like all kids do. Before too long however, just as Pearl is settling in, tensions seemed to be brewing below the surface between the school director and the AVS herself. I noticed that the smiles each morning from them were more jaw clenched grimaces than anything else and predicted the worst. Well I got it, just two days before the Christmas holidays I might add. I was informed of family problems on her side and then there were excuses about snow travel and then something else (I had tuned out at this stage). I was hardly surprised though and knew that simmering uneasiness probably played a larger part than the trilogy of excuses put before me. Wished a Merry Christmas she was not I can assure you. This left us in a bit of a pickle. The director assured me she would make all the necessary calls and not to worry too much about it.

So Christmas passes and on Pearl's return we are still no more enlightened or assisted as we were before Santa had come and done his job (at least someone was working).

It is essential to this post to mention the MDPH (Maison départementale des personnes handicapées). They are responsible for looking after the cases of kids like Pearl and also the broader range of needs for handicapped individuals. The reality is they do so very little, constructive or rational, to help out and I say this not just from our family's perspective but the dozen or so professionals and parents I have spoken to in the past 2-3 months. They are the ones responsible for finding Pearl and AVS but it is still the school and us who are doing all the leg work. We managed to find some people but only through advertising ourselves and having potential assistants sending us their CV's and details. In the meantime the file we submitted to the MDPH before Christmas had reportedly disappeared. A file that Alicia laboured over for ages to make sure Pearl would be able to get her full quota of allowances for 2011 and also to upgrade her specialist appointments. She gets told over the phone that someone had left the job and everything was in a state of disarray, this coming after you have endured all the form-filling bureaucracy that typifies the red-tape mentality of this country. So I trotted in to the office the next day and waited forty five minutes for a lady to rummage around and tell me"Oops, it was there all along" Yes, we have nothing better to do than to waste time chasing y'all down. So now having explained the bang-your-head-against-a-brick-wall ethos of theirs I will return to the AVS saga.

The director then proclaims to me one January morning that she has found someone. Yay, praise the Lord, Allah, Buddha, Krishna and any other god you want to throw into the mix. Pearl does her first half day with her new accomplice on a Thursday morning and it goes superbly, problem solved the McLoughlin household can rest easy. Until the next day that is. I am informed first thing on the Friday morning that our saviour got a better job offer that very evening and high-tailed it to pastures richer. She also had the same first name as the previous AVS, a sign? nah just bad luck.

So as it stands its limbo for the little fairy. We are awaiting word all the time and everyday I am told by the school that there is a problem with prospective assistants whether it be contracts overlapping or improper registration or credentials blah blah blah. At the end of the day the complicated nature of it all only serves to illuminate the inadequacies of a severely flawed system. A system that makes everyone else do the work whilst the infant in question goes through the system without the proper help. I think that for the current organisation to work it needs transparency and a shake up right down the very foundations. Next Monday sees us meet with all the school team, her therapists and the head of the MDPH. I hope it will be productive and yield something a bit more substantial than what we have seen so far. Heaven knows my little girl deserves that much.


Pearl having a drink and a chat :)

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Running for Pearl

This blog is dedicated to my daughter Pearl who was diagnosed with ASD (Autism Spectrum Disorder) in August 2009. My goal is to raise funds and awareness by doing what I love....Running.