Monday, December 30, 2013

Autism and feeling isolated

Well Christmas is now over.  We did well, but now reality is biting again.  Either I stop blogging altogether or I try to write about what is going on here without being explicit.  Because there is nothing else.   Our lives have mostly shrunk to these four walls, which means that there is very little of interest to write about, and autism is the one thing that dominates all our lives.

What happened two days before Christmas I cannot tell you, but it has left us all traumatised.  Apart from a handful of friends and a promise of help from Irish Autism Action, most suggestions from professionals and others have all involved doing things to my son to control or compel him, or sending him away.

The school system appears to be a large part of the problem - it has certainly affected his self-esteem very badly indeed.  So I plan to set up a more formal meeting with his current school at the start of the new term to see if a plan can be put in place to support him, before everything slides again.  The saddest part of it is that on a good day, he 'likes' school and loves learning.  I don't see how home education is going to be an option, given that I have no spare time now (I'm writing this between mouthfuls - mine and Smiley's - once again), but apparently the State will provide him with a tutor if he gets expelled!  Not a great option then.  I'm also looking at other schools and a request on twitter and Facebook resulted in a huge list of recommended schools for me to investigate.  Thank you to everyone who helped with that.  All I'm looking for is one where he would be accepted just as he is, and helped to become who he can be.  Does a school like that exist in Ireland?  I'm not sure yet.



But most of all, I cannot do this alone.  

Just telling me to love him and everything will be okay is not enough.  I need practical advice.  So if you have any, please do not hold back.

Note:  I know I have been very tardy in replying to comments on my last post, I promise I will soon!

17 comments:

  1. I wish that I had some words of wisdom for you. It is difficult to comment without knowing the schooling situation in Ireland. I know that friends find homeschooling to be highly beneficial, however, that is just not possible in your case. I really hope that you can find a solution soon. xx

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    1. Thank you - I don't see how home schooling could work either, without a huge amount of support, and since he likes school when it's going well, I would prefer to find a school that works for him xx

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  2. Unfortunately I don't know what is available in Ireland, is SNAP out there? They can help with schooling, they fight for you and your child, not the school. Also, have you tried calling the NAS? They have a helpline now, not just the website. Hope something works soon xx

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    1. The NAS helpline is a good idea -- even to get ideas about the best ways to educate a child on the autism spectrum xx

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  3. I am sorry that you are having such a rough go of it-I hope that the information that you are getting is good. Please know-whatever you choose to do..whatever situation you find yourselves in-you have lots and lots of support...it may be online...but it is there. ((()))

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    1. Thank you kathleen, I can feel it, and it really does help xx

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  4. Sorry, no wise words of wisdom here but sending you love xxx

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    1. Thank you so much for reading once again xxx

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  5. So sorry to hear things are not going well. Incidentally your first paragraph sums up my life; its hard to write about something other than autism when there isn't anything else but autism. As for practical advice, I don't know the situation in Ireland but it does seem you have made some positive steps ie getting a list of schools and contacting the charity. Besides that you have to ask yourself what is the priority here: education or mental/emotional wellbeing. Now I'm not saying give up on education but you may have to prioritise the mental/emotional health side and work around that. It could be that if there aren't any suitable schools that getting a state tutor may be the answer though its a shame that it takes an expulsion to get that. Alternatively would a private tutor help till such time that your son could manage school. Whatever you do, please know that there is lots of support for you. Deb xx

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    1. Thank you for this, it helps to know that you feel the same, and yes, your point about education versus mental health is well-made and at the back of my mind. Your blog is helping to guide me in making decisions xx

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  6. My aspie turned 21, so I've been through hell. And I know what you're going through. Isolation: that is one of the worst things about this diagnosis. Kids don't want to play with your kid. Parents and educators tell you what you're doing wrong. Funny…some think you're overbearing and some think you aren't bearing down hard enough.
    I pulled my kid in middle school because I was afraid she would be seriously injured at school. The years she spent in school were hard to get back. I'm not a big advocate of the school system. It can really hurt them.
    Do you have a boy or girl? That's important. Boys act out against things/people/walls/anything and girls take everything out on themselves and cut/want to commit suicide/have outrageous anxiety attacks. I believe that aspie kids need out of the school system. They aren't getting anything very useful and most are smart enough to ace tests. In my kid's high school year, she was put into an 'Asperger Program". This was hugely beneficial as they taught the group how to have and hold conversations, how to interpret/read facial expressions and so forth. They HAVE to learn these things and they have to understand their diagnosis. I told my kid that she was kind of like an alien who came down and didn't speak the language (social language) and would have to learn it but that she was the same as everyone else aside from that one thing. But that one thing can seem daunting, it's important to remember that it isn't everything and these kids have LOTS of strengths and abilities. Once she graduated, she picked a college and left. Don't do that. It was a terrible mistake. She is usually around four years behind her peers socially so I put her into intensive therapy for anxiety and then set her up on a computer college called 'Coursera" and 'EdX" from MIT. For the first time, she was exposed to high math and science and she just flew. It was amazing. She re-took the college entrance exam and knocked it out of the ball park. Close to a perfect score. She talked to the college nearby about going into chemistry and they were very encouraging and said they would take her online classes along with the high ACT score and some classes she has CLEPPEd (taken a test so that she didn't have to take it in college). Her aspergers is still there, but has lessened quite a bit.
    I understand that you're lonely now and it's terrible but they do settle down eventually with the right meds and classes. I always just imagine everyone around me is speaking arabic to get a feel for what she goes through. Because that's what it's like. They have to learn the language and they will be frustrated if they don't. Also….watch out for too many video games. Do old-fashioned things like making motors, taking things apart. Things that will move your kid effortlessly into engineering.

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    1. Thank you for all this, it certainly rings very true for me. I have a boy, and he would both at out and have anxiety. I think he might benefit from a school which was just about aspergers and taught things like social skills as well as academic subjects. I am worried about his obsession with video games, but because I am on my own and also have a daughter with severe disabilities, I have little time to divert his activities :(

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  7. My heart breaks for you and your boy. I really hope the school listens to you and others this time.

    A thought came to me today; would it be possible to include your son in any meetings? Perhaps after a few pre-meetings are held? That way he gets to feel that he has a say, that he's being heard and maybe he can gain some understanding on why certain things are non-negotiable?

    Whatever happens I wish you and your family the very best in 2014. May the New Year be kind to you all :-)

    xx Jazzy

    PS: COFFEE SOON!!!

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    1. Luckily he does attend most of the meetings - as you know he was involved in the choice of school. I think it is appropriate for all teenagers to feel they have some say in their lives :)

      And definitely coffee! xx

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  8. Oh C, I didn't realise things were so difficult. Unfortunately I have no advice, other than screaming into a pillow every so often to vent. Sending much love and hugs. xx

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  9. happy new year,i get your blog.IT SAYS NO REPLY.so hope you get this.your daughter has bowel problems. I HAVE
    BOTH BLADDER AND BOWEL,YES PEOPLE SEE,LAUGH,CALL VERY BAD NAMES..i have asperger syndrome and M.E.have you tryed useing suppositoies BEFORE SHE GETS IN or there is a ANAL CAP.wear them in the pool.if you
    would like to e.mail me a chat please do.mkentdad12@outlook.com i am married 13 years .we have 2,boys and 1,girl.
    i take part in a lot lot research from universities.if you would like too ask me any thing please do.
    look forward too hearing from you. mark

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