Tuesday 27 September 2016

Updates



Yesterday we had our appointment with Loghans doctors and a school representative to discuss his results/ diagnosis and the way forward, I won’t lie I left so incredibly confused and emotionally exhausted.

Basically Loghans EEG came back normal which is great, results wise he scored one point below what it would take to diagnosis him as on the autism spectrum, besides that we found out that Asperger’s is no longer a recognized diagnostic term as from 2013 it is no longer in the diagnostic manual for mental health, so basically we were told that although Asperger’s is what fits Loghan best due to him being one below the results and due to there no longer being that term they cannot officially diagnose him on the spectrum but we must go forward and treat him as such… HUH?????

He also has very bad anxiety as well as ocd tendencies although not fully ocd, he also has various TICS, ADHD as well which we already knew about….

In short we have been told what is best for Loghan is to move him to a more structured smaller school that will accommodate kids with his difficulties, they will put him on the list for a local special needs school but the waiting list is long so in the interim we have to try and find other options, I am currently in the process of setting up appointments and contacting schools but it is not easy, most of the schools are private and we just cannot afford them which is incredibly disheartening, it often feels as if these kids are being punished for their differences and that if you do not have the money your child must just suffer and get lost in the system.

In the interim of doing that, we as parents and the school have to make a few changes, we have to try and find a facilitator for Loghan to help during school hours at our own cost of course as you have to apply for a government issued one and get on a list for that as well, and just try to keep our calm and remove ourselves or Loghan in situations where meltdowns begin, I have found myself playing referee more and more at home and it is just taking a toll guys, I’m tired… no I am emotionally exhausted, if Loghan has another meltdown he will be suspended again and there will be a governing body hearing, we have been through this before, they place you in front of a bunch of parents and one or two teachers, the parents look at you like you are a crap parent it is intimidating, embarrassing and just incredibly wrong and unfair, you leave there after begging and pleading for them even though you know by law they cannot expel your child especially when you are doing everything you frikken can to get somewhere, they leer at you make you feel like scum seriously guys I don’t wish it upon anyone it really is a horrid experience and they do not understand and in my opinion should not have the right to make someone feel that way or even make those decisions.

All I want to do is scream and cry and tell them that they have no idea what hell your child’s journey has been how hard it has been for them how hard you have tried how you have gone into debt over and over again trying to find help or how you probably spend more time concerned over your child their behavior and trying everything and sundry that they probably ever will, how difficult it is when you have to separate your children in order to keep relative peace in your household.

It’s not fair, it sucks and it makes me so angry because I know I am not the only mother going through this or who has a child who is going through hell because they are different and probably do not even understand their own thoughts and choices sometimes.

I just wish I could pack up my family and go away for a while.

4 comments:

  1. I find it crazy that they classify autism by a points system? Our doctor was happy to go with traits or on the spectrum and although Aspergers is not a term used any more - very high functioning autism is as well as Autistic traits.

    I feel so much for you - my heart aches, We went through the same before L went to grade 1, they waiting for a special needs school etc. Best of luck

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  2. I know right they did an assessment with us and Loghan etc and then add all the points up and according to them he is literally one point below in almost every section and a few he is above so they cannot by right of that say diagnosis = high functioning autistic but we should treat him as such and classify him as such but they cannot give that as an official diagnosis? I also cannot understand how Aspergers is just no longer a term it is so unfair to the kids and people who fit within that diagnosis, when I read my first Aspergers book it was such an aha moment because I finally had an answer to what was up and now it just doesn't exist because a group of doctors in America decided everyone must just group under on umbrella argh! I have found a few places I am going to go and see and we will see from there what ever happens we will just have to make it work, I don't want him to be unhappy and I know that the school he is in is an amazing school they just have the ability to help him- I hope a place opens up for your little one soon, the waiting lists are terrible =(

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    Replies
    1. L actually am doing extremely well in main stream so we declined the space in the special needs school. If it will forever be this way remains to be seen. We are also in a school where the classes are smaller - they are 18 this year, the other two have 24/25 per class. That helps a lot

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    2. That's really great hun so glad it is working for you guys we had hoped to at least get through primary school in mainstream but it wasn't meant to be, the class sizes make a big difference

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