Newly diagnosed and school issues

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Hello,

My son was just diagnosed with Asperger's. He is eight and in second grade. I am still learning all of this but what I was wondering was if anyone had any advice. Currently the major issue is his meltdown's at school. Any suggestions I could give the school on how to handle this. I think this is fairly new for them as well. They have been very supportive at this point and are working on an IEP for him. However in the meantime both the school and I need suggestions on how to settle my DS down once he has started a meltdown. I know the best method would be to avoid it all together. However we are still trying to figure out what triggers them. Yesterday it was the fact that his pencil wasn't sharp. Any advice would be most welcome.

Thanks
Sarah

Welcome to WP!

I was diagnosed with aspergers at about the same time as your son. I have a huge binder full of documents about my aspergers, what I had the school do for me, what my teachers did, etc etc etc. I don't really have the time to rifle through it right now, but I'll do my best to go through it for you tomorrow and give you some tips :b.

From what I remember, they gave me an IEP, let them know I may have meltdowns at times, told my teachers about all my quirks and such, etc. One of the things that really didn't help was any kind of yelling. I was (and am) sensitive to loud noises, bright lights, or anything that overloads my senses, so if your son is like that you might want to tell them to try not to overwhelm him. They had me go to something they called "Resource" a couple times a week. This was basically me meeting with the special ed. teachers a couple times a week, and they would help me with certain things.

This is just a very vague outline of things. I'll return later with more detailed info.

Hi Sarah,

My son was also eight years old and in second grade when he was diagnosed. You already know that the best strategy is to avoid the meltdowns, but you can't always do that. Trying to settle down a meltdown once it has started, in my experience, tends to backfire. Your son picks up on the anxiety of the person trying to calm him, and all that happens is that their anxiety feeds his. "Fixing" the trigger, e.g. sharpening the pencil, also usually won't help and might make things worse. It's not really about the pencil - it's about things being "wrong," not the way they were "supposed to" be.

How to deal with his meltdowns depends in part on how they manifest. If your son is a "hider," try to establish a safe place for him to hide, that both he and the school are comfortable with. If he throws desks over, however, it's a more complex "fix." When he's not upset, try talking to him about what gets him upset, and what alternatives he can use to express his frustration without endangering other people. Come up with safe, acceptable alternatives - and practice!

During a meltdown, unless your son is a very unusual child, no one should touch him unless absolutely necessary for his safety. It's much better (if necessary) to remove other children from his immediate area than to try to remove him by physical means. While in a meltdown, he will interpret any physical contact as a physical threat, and will respond accordingly. It can be heartbreaking to witness, but school will view him as dangerous. You want to avoid that perception.

If your son just cries when he melts down, they should let him - if he'll follow someone out of the room, that's even better. Let him go out of the room, cry, scream, yell, whatever. The person who's with him should not try to calm him down, just let him do what he needs to do to get it out. When he's done, (which will be much more quickly if no one tries to hurry him), the person can ask him if he needs a tissue, or needs to go to the bathroom, or if he's ready to go back to the classroom. If he's ready, that will be it (probably). With my son, he was often non-verbal right after a meltdown, but he would nod or shake his head. Once he could do that, he was fine, and within minutes he was talking and participating like nothing had happened.

Kids tend to be much more accepting (in second grade) of this kind of behavior than the teachers are. Teachers will talk about how it affects the other kids, but they really mean it bothers them (the teachers). I was always hearing from the teachers about the other kids, but when I had evaluators observe, they said the kids were fine with my son's quirks ... the teacher wasn't. Also, parents of other kids would come up to me spontaneously and tell me how much their kids enjoyed my son. Your school sounds accepting - I hope that continues for you!

When my daughter has a meltdown it helps her to get a drink of water. Sometimes we have to bring it to her, but it helps. It gets her out of the situation and helps her to change gears.

Alone time helps, but at school this is hard. Last year she had a crying episode at school and not being diagnosed, nobody knew what to do. The teacher was frustrated and made my dd sit in the hallway. Which did end up helping in the end.

Al

Is there a "safe place" she can go when she is starting to feel stressed? Is she able to tell that she is "starting to feel stressed?"

OH, school can be so difficult. My son was the same age at diagnosis. We put him back one grade to catch up emotionally. We also put him in a different school, so there was little social stigma associated with this.

First, do not wait for the school to do anything. They are cooperative now and possibly you will get the support you want. But don't rely on it. Even if that doesn't happen, there is MUCH HOPE! Let's just suppose for just a moment that they don't accept your child's diagnosis. (My son's school did not support an asperger's diagnosis but it didn't matter. Read on.)

That's where to start. You are your child's advocate, first. Your direct line of influence is your child's teacher. You educate your child's teacher(s), first. Trust me, your child's teacher wants as little trouble as possible. So, you first educate yourself. You must realize that your child is the first level expert. Find out from your child what is and is not working.

You are the second level expert. Go out to the Internet, find good literature about autism or aspergers and match what applies to your child to a description of your child. Give this information to your child's teacher(s). This gives him or her very pertinent do's and don'ts about your child.

If you can get this info into an IEP, do. For instance, I actually have in my son's IEP to not make him eat lunch. Why go there? I know it is a battle not worth fighting. Also, while he was in 2nd grade, he was allowed to spend the whole day under his desk. In third grade, he spent time at his desk but had a "behavior specialist" he could see if he got too stressed out. In forth grade, he negotiates with his regular "Gifted and Talented" teacher. He grows.

Become friends with your child's teacher. Be sure to thank him or her at all major holidays for the effort he/she gives to your child. Bring him/her lunch every once in a while. Send special thank yous. Your child is extra work and your teacher deserves a little extra thanks for making the extra effort. Trust me, it goes a long way!

Here's the deal- an easy summary. Your child has needs. You and your child know best what those needs are. Educate the first line, your child's direct teachers. Get in your IEP whatever you can. Then, thank and reward those who help you. It's not manipulation in any way. It's just giving gratitude and reward to those who help you in your endeavors.

As an addendum, every kid is different, every family is different, every school is different. Learn everything about your kid (individually and by diagnosis); learn everything you can do to help; learn everything you can about your rights in the school system. Never be afraid. Your job is to be a strong advocate and parent. If that hurts peoples' feelings, so be it. At the same time, understand that you work within a system and work that system.

Best of luck to you!! !! !

Mary Elizabeth
A VERY proud mom of two Aspies, one diagnosed, one not.[u]

Hello,

I have 3 sons - my 2 oldest diagnosed with Aspeger's, youngest not diagnosed but I think he is.

My oldest son is 9, my second 8.

Last year they had brilliant support at school. (This year is a different story but I won't bore you with the details).

Some of the stuff in their IEP included:

- A class timetable at their desk. My youngest was a bit behind in reading so his timetable had pictures. It had velcro sticky dots and if there was going to be a change they would change the picture.

- Time away from the classroom in the Special Ed classroom everyday. 30 - 60 minutes per day. If this is not possible having a quiet place where your son can go is advisable.

- They had input with social skills and emotion management.

- At Physical Education class my younger has a teacher aide. My older son's teacher knows he has Asperger's and struggles with low tone. Therefore he doesn't push my son to do as much activity as the other kids. As long as my son has a go, that's okay.

- The kids had a quiet corner in the classroom that they could go if they were overwhelmed. They had their favourite books (dinosaur etc) they could read.

At after school care (they go 2/week) they have their own table with a cover. If everything gets too much they are allowed to go hide under their table with a board game and books. The other kids know to leave them in peace.

There is a thread in the Parent's Forum with more information about IEP's.

Anyway, have to go and pick the boys up from school now.

Helen

P.S. Always know what is happening at school. Never presume the teachers will do the right thing by your son. If you get a good teacher, fantastic .... but never presume next year's teacher will be just as good. Don't judge the teachers by how wonderful they say they are .... only judge them by what they do and how happy your son is.

Hi, and welcome.
I don't really have advice to offer, because I'm in the same boat...8 year boy in grade 2, newly diagnosed with Asperger's. He is only very, very rarely having meltdowns right now, but his twin brother, who is currently undergoing assessment, is having many at school. So I am following your thread with great interest, and appreciating all the advice.

I thought this was really important:

Thanks so much for all the advise. This can be very overwhelming and my heart just twists to see him struggle.

Hiya, hope this helps a bit. I know meltdowns are really upsetting for everyone.

For reference we call meltdowns Tsunamis, all those on the spectrum jellybeans and neurotypicals marshmallows. I have posted this on a previous thread so for those of you who have seen it already apologies. I sent you a pm starry alexis hope it helps. x

WHAT STARTS A TSUNAMI? aka Meltdown



1. I've asked my kids and their most common trigger is FRUSTRATION. Imagine your child in the classroom trying REALLY hard. If your child has for example Dyslexia, s/he will quite obviously have difficulties in specific areas. With jellybeans you see it may not be as obvious, it may be a particular lesson that's coming up, a break time that proved stressful or just trouble ruling a margin on a page. It can be the smallest of things to trigger the feelings of frustration. Frustration when accompanied with increased stimming is a sure fire way to see the early warning signs.

2. COVER UP. This is also a common reason for a Tsunami, the time your little jellybean HAS done something wrong and is so angry with themselves that the anger is overwhelming and they get so cross that they punish themselves and others. Apologies are hard when your skin is leaking like a colander, your arms are flinging and flanging and your face is screwed up like last week's homework. The Tsunami is in a kind of bizarre apology, a recognition that they know they've done something that they shouldn't have. They are very sensitive and even when they have been a little devil, most know it and do beat themselves up.

3. SENSORY OVERLOAD. This is the most common reason in jellybeans who may have over-sensitive reactions to their surroundings - to light, heat, clothing, sounds, smells. Remember that to these jellybeans it may feel sometimes that every single thing in the room is trying to attack them. Why? Because they actually CAN'T filter anything out. Everything can hits them too hard and too fast, all simultaneously sometimes. They may feel too hot (remember their thermostats can be set far too high), and at the same time they can hear the neon light making a deafening buzz. Someone in the room is chewing a sweet and that sounds in their ears like a whole swarm of bees. Dinner is cooking and your jellybean can smell every ingredient, just as if he had his nose right inside every cooking pot and saucepan. Light is coming through the window and dancing about all over the place like pieces of blinding broken glass. And you're speaking to him and your voice sounds as if it's amplified so loud that it's completely distorted - it's like having his ear next to an amp at a rock concert. Is it any wonder he suddenly starts to scream and shout at everything just to STOP AND SHUT UP AND GET OUT OF HIS FACE?

4. INFORMATION OVERLOAD. This is a particular problem to jellybeans who may not be able to listen for very long. Did you know, some jellybeans actually can't listen and look at the same time? They have to do one or the other, but may not be able to do both simultaneously. So, if you're giving too many instructions too fast and these instructions are complicated and involve shifting between listening and looking, and if there's an emotional edge to what you're saying, too, that puts your jellybean's brain into free fall. It's like a computer crash.

The best way to cope is to deal with them, and trust me they need dealing with. TSUNAMIS are DANGEROUS. It's as though we lose control and although we may be sort of aware of what we're doing we just can't stop. As a parent you really do need to alert everyone to Tsunami-spotting and try to stop it before it runs its full course. It comes on in waves, sometimes out of nowhere, and CAN be halted in the first wave, which lasts about 20 to 30 seconds, but after that it's as if we're drowning under successive storming and crashing waves of panic, fury, frustration. Our brains go down under it all. It's a very scary experience, for us, as well as anyone who may be around, and WE NEED HELP PLEASE!

WHAT YOU CAN DO TO HELP - WITHIN THE FIRST 20 SECONDS

1. Speak to us and tell us firmly and in a single word that we are getting out of control.

2. DON'T TOUCH US!! !! !! Touch puts us into even more overload.

3. Don't give us a lecture - we can't HEAR.

4. Leave us alone, let US have the last word.

5. LET US RUN, if necessary, out of the door, upstairs to the bedroom or to lock ourselves in the bathroom.

6. When we emerge SAY NOTHING about it, ignore us when we reappear, we are probably a bit sulky still so let us be. We will communicate with YOU when we are ready.

WHAT CAN THE TEACHER IN THE CLASSROOM DO?

1 Don't Panic. Speak clearly and firmly - just one word is best.

2 Distract the jellybean with something that they are good at. SUBTLY

3 Remove the jellybean from the classroom with one adult to a quieter more private area.

4 Allow the child to STIM and don't crowd them, just be kind and keep them SAFE.

5 Allow the child to let off steam physically, allow them to RUN and run and run, the playground being preferable to the school car park.

6 Reassure and stay in the background. The child will wind down.

7 Don't threaten with anyone or anything.

Finally on Tsunamis, DON'T TOUCH. Unless you are invited to, try and avoid the temptation of hugging a distressed jellybean, even when you think its safe, it MAY NOT BE!

Oooh by the way forgot to mention this!

I'd like to add just one thing here. I tell parents, teachers and carers to treat a meltdown as if it was an epileptic seizure, because usually there's an altered state of consciousness. And, it's worth remembering that there's an outside chance it just might be a complex partial seizure as we've discovered with my youngest son

Welcome, starryalexis....my son is in kindergarten and has some pretty intense meltdowns sometimes. Everyone here has given wonderful advice...I agree, get as many accomodations as possible in your son's IEP. My son's IEP deals almost entirely with behavioral issues, since he doesn't have any academic issues.

It is great that your school is willing to help your son! We are fortunate with our school as well.

I would say that long-term you should be moving your child towards handling the issue without melting down (this is going to take years of work). It will probably improve naturally too as he gets older, similar to NT kids (ie. my NT 6 yr old will cry if her toast drops on the floor, but I am guessing that she won't if the same thing happens when she's 16).

In the short-term I agree with some of the other posts that say about just letting the meltdown happen (in a safe, reasonably undisruptive way). If my AS son is melting down, there is no point reasoning with him because he is too confused at that point to handle it. He can probably talk about it later. Distraction sometimes works to snap him out of it.

The way that the short-term and long-term work together, is that you allow the meltdown, but you make sure they understand how that behaviour can appear to others (eg. maybe defiant of a teacher) and get them to still be accountable for it. For example, my AS son melted down at school yesterday (refused to talk or move from his desk and I had to go in and get him to leave class). Turned out that all the class had shifted desks except for him (so it didn't disrupt his routine) and he was upset. I wasn't able to get that out of him until two hours later. The next day I got him to go back to the teacher and apologise for not talking to her. He volunteered to tell her why, and the teacher was really pleased that he was actually starting to verbalise what he was feeling.

I would also say that it is good to establish a working relationship with the teacher in the sense that you can both help each other because you are dealing with similar things at home to what she/he has at school. In fact, you're in a better position to help. Make sure they know they can come and ask about stuff. I usually always go into the school to pick my kids up, so I am daily outside the classroom in case the teacher wants to come and have a quick word with me. Some days I will go in at the start of the day and warn her if my kid is hyped.

I am just so heartbroken and guilty that I have gone through all of these issues with my son 13, and only just had a diagnosis, I dont know if its because I live in a smaller region or if its generally not looked into in australia unless mothers stumble across it and demand their doctors look into it... thats how it happened with me... years of complaining there was something not exactly right with his tantrums and behaviour then the last 18mths of nagging and demanding answers and asking and searching and going through other diagnosis... and finally we are here... thank god... but my son suffered badly at school because of his meltdowns...he was suspended everytime he had one in his earlier years.. between 7-9 because we lived the near the school and he would just run out and run home... the police and fire dept were called once in year 6, because he ended up on a second story roof just to escape the teachers who wouldnt leave him alone...because we had moved and he couldnt run home.... and last year he was suspended every couple of weeks... either for fighting or for meltdowns... I was not in a position to change schools.. so basically I started taking him out for lunch every school day and brining him back and for the last 6mths of primary school things settled down for him... his school appeared to help.. but in reality just thought he was a badly behaved child and refused to look at anxiety issues etc... we didnt have an aspergers diagnosis.. only my newly found information and suspions at that time.. so they didnt take me seriously... but I kept fighting.. this is what I would suggest... DO NOT let the school suspend your child for a meltdown... take it to the education dept or go above your principals head if they try this.. make sure that if your child is a runner or hider that you co-ordinate with your child, the counsellor, the principal and the teacher a safe place at school for him to run to rather than leave school grounds... but.. when we did this I was still at the trusting the principal and educators level and although we set the library up as a place for N to run to.. nobody told the library teacher.. so the first time it happened he ran there and was told go away you cant come in here... (that was the day he was on the roof).. all in all it made him completely lose faith in his teachers and the adults at the school because they couldnt follow through on what they were promising him...

My biggest advice is to stand your ground till you get what you know is a safe plan for your child...

Hope that helps little..

Lissa