Hints and tips for school and integration

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Hi everyone, I am reading through the forum topics for a few days and found a lot of extremely useful information I can use and think of, however did not find similar topic for my question, as most of the other topics are relating to college and university related questions.

My daughter (10) just had the diagnosis for Asperger's recently. She is very high-functioning, has more of the sensory processing disorder part by being oversensitive (especially to noise, but she is easily overwhelmed by crowd, or flashing lights as well - e.g. the mall is a hell for her). In terms of socialisation she loves to be hugged (all the time around me if she can), wants to have friends, just do not understand sometimes how others are wired and what they expect from her or whether what she expects is appropriate . She takes eye-contact only if necessary (but she is unable to pay attention while taking the eye-contact, so it is like she if switched off). Her special interests are reading (which is also her way to be switched out from this world to her own), Minecraft, and nowadays parrots as well (since we have 3). She is reading at least 3-5 books per week (I think she read more than I ever in my life although I like reading ), she reads some of the books again and again and again (until the book is falling apart literally). She is doing the same with movies, loves watching the same movie 100 times, every day (sometimes 2 times a day if she has the free time). She is aware of her diagnosis and accepts it really well, she said the other day she would tell anyone and if someone would be picking on her, she would not care (I was soooo proud!).

In school, she is behaving very smartly with other people and she can pretend to be normal for a while by using what she has already learnt (from those thousands of books she has already read and from watching others and 'mimicing') so for first glance her teachers did not believe in the diagnosis, as for them her attention deficit problems are more visible (they thought from the symptoms she might have ADHD without the 'H' letter, which turned out from the specific tests she does not have at all). However Any attention deficit comes from she does not understand what is expected from her or how she would need to do. I can understand teachers as well, because she has meltdowns only once in a while at school, she usually brings all the stuff to home and as she is one of the smartest children in the class, for them it is a bit weird she has an autism (as they have the impression that is something more serious I guess).

I have to stress out at this point I am from Hungary so I am not sure exactly how it exactly goes in the US, but here if you have an official diagnosis it makes you eligible for a lot of things including being fully integrated (in terms of accepted as any other people with disability), have a psychologist and a teacher for special needs who visit 2-3 times a week depends on the needs, and helps out for the school teachers and parents as well to teach these children what they need (if they need socialisation they teach that, but if the need help in mathematics they help in that, if required they sit in the classroom and watch / helps). We are in the process of getting the paperwork done so we can have this teacher (which will take another 2-4 months or so due to bureaucracy ), luckily it's summer holiday now, so we have some time to think about next steps.

Our school is integrating children with special needs as per basics, and both the leadership and her teachers are really supporting from the beginning with her! They were aware of the whole process we are getting a diagnosis and they were paying attention to her special needs as much as they could. They even invited her to a camp this summer where they invite only the most talented children to teach them acting, music and such. They will provide an extra person who will pay attention to my daughter's need. So I am very very lucky!

Now comes my problem and question, as despite all their good faith and willingness to help they are not specialised to autistic children. The rule they are integrating is one thing, and reality is another (despite they get some lectures for special children, lecture is different from real life). Therefore we are a bit stuck in terms they would really want to help, but they would need to receive some instructions, hints and tips, or 'how it works' kind of ideas.

I was trying to find a list of good hints and tips teachers can try to use (or at least try out if works) but so far with no luck. I have read some books as well, in which I found some useful information, but nothing specific nor a full list of possible ones (and of course if you are a neuro-typical person, you will not understand fully what and how these children feel, so it cannot be learnt from books).

I am interested in things like 'let her go for lunch alone, but in a specific time every day', or 'let her choose her seat and mate sitting next to her (or sit alone if she prefers) and do not change this during the year ever', 'let her write the exams in a separate room where she can be alone', 'let her use her Time Timer watch so she is aware how the time goes for specific exercises', etc...

I have a few ideas in mind especially based on what I know about my own child, but it would be great to have a list which I can share with the teachers as well (not only to learn and understand how to handle my daughter's needs, but to handle similar children in an engaging way).

So please help and write down your thoughts about this, do you have any experience, or have you read something interesting in this topic which you think worth to share?

Thank you in advanced for all of you!

Judit

Hungary is a very beautiful country. I wish I could do the Danube cruise there. And explore the Great Plain (we have the Great Plains here in the US).

My wife went to Budapest with her son. I didn't go, though. I wish I had gone.

I am a person who believes in "inclusion," for the most part.

Your daughter seems like she's making a good effort to be friends with people. I'm rather of the belief that if she's given too many "accommodations," that she'll be resented by the other kids. I believe almost all kids want to do things like the other kids. They don't want to "stand out."

I do think a special room, to "calm down" would be beneficial. It's beneficial, at times, even for "normal" kids.

I don't believe she should eat lunch alone--unless eating lunch with other kids causes meltdowns. What a great feeling to be invited to a table by other kids! I know the feeling of NOT being invited!

I agree with Kraftiekortie. I do not research autistic children, just adults, so keep in mind that this is not my official "area," but I suspect that the autism treatment programs for kids don't always help them in the long term. Kids will grow up into adults, and they have to learn how to live in the non-autistic majority world in order to go to college, get a job, get married, and be parents. And special needs programs that are not specialized for autism might not be challenging in any way. I know many autistic adults, all of whom were either diagnosed late in life or never got an official diagnosis, and all of them are living "normal" lives with jobs, homes, spouses, etc. The key seems to be having parents who understand when a child needs more explanations and patience than usual.

My suggestion would be to read up on autism in childhood and adulthood, and then provide the school with your own definition of autism and what accommodations you feel would be appropriate for your specific child. I can't recommend books about autism in childhood, but I recommend "Look Me in the Eye: My Life with Asperger's" by John Elder Robison, and then one of the books about autism in females, such as "Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age" by Sarah Hendrick (I haven't read this in its entirety yet, but I like it so far).

Hi All,

Thank you very much for both of your answers. We were on holidays and had a lot to do, so I came to answer a bit late, sorry.

kraftiekortie: Thank you for your advice. She has no meltdowns due to eating with others. For her the whole thing is a bit more complex I guess. She is more or less OK in the school and have a meltdown only once in a while, but then when she gets home she has the meltdowns at home, sometimes 2-3 times a week. I think it is caused by the whole thing: a lot of noise, too many people (she says she feels up to 5 person in one place is too much, 4 is still ok, so you can imagine 25 is a real mass for her), too many inputs. I think we will try to ask for a place where she can calm down, probably they will let her go to the music-room or somewhere where no class is held in the mornings. I think what matters for her is to be in a place alone, without the noise rather than being it a special room.
I think we are lucky because most of her class mates are just so normal and nice, they invite her to their table or to the games, even if they know she will have difficulties with understanding all the rules or working in a group. Some children might have a kind of social awareness or inclusiveness, not sure, but this is heart-melting to see when she is trying (not very successfully) and then someone realise this and tells her 'oh would you like to join?'.

Also I had an interesting observation this summer about meltdowns. We tried to arrange the best possible programs for her for this summer, and despite she went to summer camps it was not with a lot of children, usually maximum 20 and with at least 5-6 adults keeping them busy all the day, with thematics. She had no big meltdowns since July, and I think this is because there were no situation where her nerve system would have been overwhelmed with information, noise, light, etc.
When we went on holiday together we made sure she has enought time to rest, not went on too many walks or sight-seeings, spent more time on the beach etc. These were less stressful places for her.
I am very interested what will happen when school starts again, how she can cope with it now, that we help her through, plan the day and will have a written daily schedule in school as well.

We were thinking about this a lot since my last post and now we are trying to ask the teachers help from September in checking on her daily routin. It will be written down for every day in the school separately from the home schedule (in two different notebooks), all they will need to do is to go through the checklist with her. We will try to make this the least painful for the teachers. I have mixed feelings about this as well, because in the one hand I can understand it is difficult for them to cope with special needs while they have 25 other children, but on the other hand I think it should fit in their time to cope with it and they might be a bit lazy. I cannot decide because in return they really pay attention to her and make some special arrangements for her (e.g. she can make any exams verbally if a written form is not a legislation - she needs to write it e.g. in year-end, or she does not get any bad points or letters for her homework is missing, because teachers understand it is not being careless, but her attention is distracted a lot).

SocOfAutism: Thank you very much for you too. I think it will not be something to "fear of" to have a special autism treatment or program here as it is not very common. According to the director of the school, there is only 1 child with autism diagnosed in the school (amongst 1600 children) apart from my daughter. They have children with other disabilities tho, this is an integrating school (which is good).

I have to point out here that autism is still taken into consideration as something bad, so parents are not very keen to share this with anyone. I can somewhat understand them, it can be risky as their children might by discriminated by some. Also, a lot of parents do not ask for an official diagnosis, probably for the same reason or because it is very difficult to accept your precious one has a problem. So I guess there might be a few other children in the school with autism undiagnosed, unrealised.

It is not very easy to have any kind of treatment if you do not wish to pay a lot for it, so either I pay for the specialised teacher, or have to fight for one. From legislation if she gets an official paper, she can get a treatment 3 times a week, by a specialised teacher going to her school and check up on how things going, doing whatever is required. They have the right to ask out the child in question from the classes, but if it is not required, they can make classes on how to socialise better or just to check through on the daily routine with her and give advice to the parents. However to get there is a long way and it is not sure we get the paper, because she has no learning issues, and they focus more on children with issues on reading, mathematics etc. I do understand there is at least 3-4 children just in her class with bigger issues from the teachers' point of view. My daughter does not make any noise, harm, paying attention and knows everything, so she is counted to be a 'good one' (or even one of the best ones), that is another question she has meltdowns every second day, until it does not happen in the school. Teachers find disgraphy or dislexy or ADHD a bigger issue, which is in some way a bigger one for those children as well, my child at least is able to learn properly.

I bought the book you suggested, I found it in Hungarian as well (Look me in the eye), and it has a second book as well (I bought that too ). I have read Claire Sainsbury's book (not sure of the English title but it was really good), and I have Tony Attwood's guide for asperger syndrome... I also applied for a one-week course for teachers and parents about autism, this is held by a non-profit association, this will be sometimes this autumn, no exact date yet. I will look out for the other books as well you suggested, some might not be available in Hungarian, but then I will order in English.

Thank you very much again, I will let you know how we go on with the school from next year

Judit