My son has Asperger’s Syndrome. Another invisible illness.

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This is not the blog post I was planning to write this morning, but it’s what took over.

My son has Asperger’s Syndrome.  This morning he had one of his classic meltdowns because he didn’t want to go to school.  Yesterday he had his Physical Education elective. He does gym.  He and the other kids travel to a commercial gym and do two hours of weights, bootcamps and HARD, intense exercise.

My son pushes himself hard in the gym.  He has two parents that do the same.  It’s not surprising.  But he hasn’t learned where the limit is.  How hard is too hard?  His natural competitiveness means he pushes himself and competes (in a friendly way) with his mate who, unfortunately, is far fitter than my son.

The Asperger’s is the real problem. My son is very literal. And very keen to please.  And always wishes to excel.  Most importantly he lacks the ability to self-regulate. These are common Asperger traits.

When the instructor tells him to go harder, my son does as he’s told.  He doesn’t self-limit, as most people do.  My son doesn’t have that ability.  Let’s just remember he has AUTISM for a moment.  Very few people understand what Asperger’s or Autism or Autism Spectrum Disorder mean.

So when I wrote on the form in the part that says ‘Medical conditions’ I doubt they even read that I put Asperger’s and high anxiety there.  If they read it, they would not have understood what it meant.

So I wrote very clearly that they are NOT to push my son hard. He will push himself hard enough.  He does NOT need to be told to work harder.

It’s a trainer’s job to push their clients to the limits.  It’s also the trainer’s job to get to know their clients, and understand how much pushing they need.

My son was pushed/pushed himself well past his limits yesterday. He was exhausted when he came home from school (I had to go pick him up because he was in a great deal of pain and some distress when he finished gym class).  He has literally made himself sick by working out too hard.

He also has hypermobile joints, which I also wrote on the medical form.  I noted this was another reason to NOT push him too hard, as his joints subluxate, and this sometimes causes a lot of pain.  It is clearly not a good thing when you’re joints subluxate, and the trainer should have been more aware.  Exercise is recommended for people with hypermobility, but with care.   Some types of exercise are too harsh for a kid with hypermobile joints.  This was also obviously ignored.

So I encouraged my son to do some light exercises last night. Warm up the muscles, do some isometric exercises and then stretch them out. I showed him how to use a foam roller, but this was far too painful.  Remember, I am a qualified personal trainer. Non-practicing, obviously.  But I am educated in current exercise theory and practice.

I also warned him that his muscles would hurt more in the morning. And they would hurt more again in 48 hours.  DOMs.  Delayed Onset Muscle Soreness.  When you push hard, your muscles will hurt a quite a bit when you use them.

However, at rest, your muscles won’t hurt at all.  It is an avoidable pain, except for that you DO have to move.

My son has a very low pain tolerance.  This is also typical of kids on the autism spectrum.  Most kids have sensory issues, and a low tolerance to pain is common.

I still find this hard to deal with because I have such a high pain tolerance, and always have had.  I have to work hard to be sympathetic.

My son did NOT want to go to school today. He was in too much pain.  He did not want to do more PE today, even though I told him that another (light) exercise session is the best thing for him.  Just DO NOT push so hard.

He only has two switches.  FULL ON and OFF.

He wanted to switch OFF, but I wouldn’t let him. He had to go to school.

And so was unleashed an Asperger’s meltdown.

These are NOT within his control. He was NOT being naughty. He was NOT manipulating me.

And I am incredibly tired of being told that he is.  Ignorant people who barely know my son tell me how best to parent him all the time.

It really makes me furious.  Experts, experts, experts. They are everywhere!

My son cannot control his rage.  I told him calmly that he needed to go to school. He refused. I stood firm.

You try forcing a 14 year old boy to get dressed into his school uniform.  I can’t physically force him.   Even someone stronger than me could not physical force him. Nor should they.

I stood my ground.  And repeated that he is going to school.  Calm, resolute repetition.  No anger from me.  Anger feeds anger and makes the situation worse.  I will not feed the fire.  I remain calm.

Again, people tell me I am too soft. (Go fuck yourself!)

I made him breakfast and gave him a nurofen for the muscle aches.

He started screaming the house down. Threatening to kill the kid in his cooking class that bullies him.  This kid is also in his metal work class, so my son said he would take his head and crush it in the drill press.

Just hearing my intelligent, articulate, usually kind and gentle son talk this way is very distressing.  I honestly don’t know if he will do anything like that.  He can be violent.  Usually he takes his rage out on inanimate objects, but he as hurt his sister. Not badly, but she is afraid of him at times.  She now has a lock on her door, so that if she is afraid she can lock him out.

I can’t bow down to that threat.  I don’t believe he WILL harm this other child. BUT I have seen kids provoke my son. Provoke him, punch him, pinch him and then he does snap! And he snaps out of all proportion.

When my son is in a rage, he is out of control. He CANNOT control it. He is not enjoying it. In fact the rage in part comes from his discomfort with the feelings in his body. His inability to control his own feelings.  And so the thing spirals up, in a positive feedback loop that usually winds up with him punching a hole in the wall or smashing something.

I was proud of him today, because he went and punched the punching bag instead.  That is progress.  That shows that he is reaching for control.  And succeeding to some degree.

He was abusive to me. He yelled and called me names.  He has never physically threatened me.  I told my daughter to just lock herself in her room until he was calm.

I ignored him. I remained (externally) calm.  This is NOT easy to do.  But as I said, responding in anger only escalates the situation.  Throwing petrol on a fire.  I smother the fire by refusing to react.

I talked him down.  When the rage fades, there are tears.  Many, many tears.  He reverts to a small child, and he is in such emotional pain.  This is just one of the many ways that I know that this is not emotional manipulation. That he is completely out of control. And that he is NOT enjoying the experience.

It is NOT about him getting his way.

I have seen plenty of kids throw tantrums to get their way.  And believe me, it’s a very different scenario.  When you give them what they want, the tantrum ends.  And they are happy. Evily, self- satisfied and happy.  They have an air of victory and they are usually smug and superior.

Not an emotional mass of racking sobs.

We’ve all got that friend who pampers their brat child and is raising a monster because the child always gets its way.

I am not doing that. I have a child with an ASD.  The differences are so apparent, I am staggered that people cannot see the level of pain and distress that my son is feeling. And that it has no way to come out, except as rage.

We have been working with a good psychologist for many years, to find ways to channel this rage.  Ironically, exercise is one of the best strategies.

And standing firm.

But sometimes the key is also knowing when he is too upset for school.  Knowing when he cannot handle the pressure of a bunch of smart arse kids who are going to bully him.  Knowing when he really might snap.  Let’s just remember that teenagers are about the most self-absorbed, cruel creatures on the planet.

Today I made him go to school.

As I said, after the anger comes tears.  Deep, racking sobs.  His whole body shakes.  The misery and emotional pain is palpable.  He threatens suicide. He tells me he can’t live like this anymore. He tells me that life is not worth living with all these feelings.  That the pain he is feeling takes all the pleasure from his life.  That he doesn’t want to be here anymore.

Does a spoilt child who just wants to get a day off school react that way?  Hmmm. Not so much.

I hug him tight.

This is for two reasons. Firstly, of course, I am giving him emotional support.  And love. And reassurance.

Secondly, it’s a sensory treatment.  When he was younger we had heavy blankets to wrap him in, and I would hug him tight when he had tantrums.  The weight is physically calming.  It’s the correct treatment.

Many,  many times people told me I was ‘rewarding bad behaviour’.

Well fuck you!  Number one it’s not bad behaviour.  My child is suffering the equivalent of a seizure.  Do you punish an epileptic child for seizing?

Number two, it’s the correct medical and psychological treatment, you arrogant arsehole!

Judgement.

We all feel it in the RA world. I have been dealing with it every day of my life since my son was born. Ignorant people who know nothing about my life, nor his, and know just what I am doing wrong.  And are happy to tell me so.

Perhaps that’s why I do not take well to people judging my RA.  I have had quite enough of ignorant idiots telling me what’s best for me and my family.

Now its 40 minutes since I got him on the bus. I am just calming down.  While I must always appear calm on the outside, I am certainly NOT calm when these episodes are happening.  It takes me a very long time to relax and recover.  The stress helps no one.

He has just texted me that the kids won’t leave him alone and he needs to be alone.  I have seen this before. He TRIES to tell them to leave him alone. But they don’t.  They follow him and they try to cajole him out of his mood. They are kids. They don’t know.  They are tryinf to help, in fact.  But he has been taught to go to a quiet place, and is trying his best to do that.   I need to contact the Assistant Principal and arrange for there to be a place that he can go when he is like this.  It will be interesting to see how helpful she is.  It’s a simple request.

I can feel the stress rising in his texts.  This is the danger period.  This is where he might lash out and snap and hit another kid.  We are texting back and forth. The bell will go in five minutes. Once he gets into class, he will be fine. His mind will be occupied.  He will revert to the child that is desperate to please and excel.  I just need to keep him occupied and focussing on me, and not the other kids for the next five minutes

The first class is PE.  That could go either way.  If his muscles hurt too much, I could be getting a call from the school very shortly.  But it should make him feel better.

I’d better get dressed and be ready to go to the school and manage the situation.

And explain, once again, what Asperger’s is, and how it affects my son.  By now he will be in class.  No phone call yet.  We might be OK.

And as for my ongoing full body mega flare?  Yeah, it’s there.  I just have to ignore it.  For now.  There are bigger issues than RA right now.  The adrenalin from this morning acts just the same way as a huge dose of prednisolone does. Fight of flight response.

But the crash is terrible.  Now I have to hit the shower and stay on alert for a little longer.  In 20 minutes I will be off the hook.  Crisis averted.

And then I need to ring the school and advocate for my child.  And my massive ‘to-do’ list will have to wait a little longer.  I am overloaded.  Its nearly 10am.  I have achieved nothing.

Time to email all my teachers and ask for an extension on my assignments.  Its unlikely I will be able to get out and take photographs today.

Life happens.

4 COMMENTS

  1. Wow, sounds like a normal day at my house. I know where you are coming from, I have 3 ASD, and 1 with Autism. yeah four of my six!!!
    Rage is such an issue, and just dealing with ASD kids on a daily basis can be exhausting for fully abled parents,but when you have RA your exhausted before you start!
    I have lots of tricks I use, but I am not offering advice, as each of my ASD kids are worlds apart, how could I advise any other ASD parent. I just say that I do really understand.
    Keep strong, and know you parent to your best for your children, both of them.
    Your daughter also has a cross to bear as a ASDs sibling, help her keep strong too.
    Seek support in those who truely understand and do not judge.
    See if their are any teenaged ASD support/ activity groups in your area. It’s not a failure to ask for help.
    Wishing you well. Xxx

    • Thank you Sarah, I appreciate your comments. I;m always happy to hear how other people manage, but as you say, each child is different. And you’re right, it is a challenge to give my daughter the appropriate support as well. Your house must be a very interesting place to live sometimes! Definately a full house! All the best to you, I admire how you cope. thanks 🙂

  2. My daughter went through a serious bout with an eating disorder several years ago. The fights were horrid, when all we were insisting upon was that she eat. The judgement of others, who surely thought we were the stereotypical overbearing parents that caused her disorder was clear. It was horrid. All we could do, any of us, was our best. I remember the screaming and tears, from my kind, sweet child’s face. It was horrid. I do remember that the therapist said to remmeber that this is not her. It is the disorder talking, fighting to keep hold. Fighting to kill her. Which we could not allow. Seeing it as a separate being from her, an unwelcome and dangerous intruder, helped us do what needed to be done.

    I’m not saying that is the same as your son’s rage in any way. I am merely saying I’ve been there in a situation with a child who is out of control, who needs to be under control, and it was hard. I sympathize with your situtaion. And to handle it along with a body flair just sounds 10 times worse. Hang in there.

    • I understand what you are going through! My daughter has social anxiety and it has gotten worse since my RA diagnosis. She is in therapy now, don’t know if it helps, but the authorities at school actually made her go back into her shell more by putting excessive pressure on her. I’m trying to put her in online school but they have a ton of forms for me to complete and some days my hands are too swollen to deal with anything besides work. I’m going to end this here, as it is hard typing with 2 fingers, but you get the idea. I hope you get through this difficult time, you’re not alone

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