The truth about living with Rheumatoid Arthritis

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Asperger’s syndrome and how do I balance the needs of my two children

My daughter just texted me from her bedroom.  This is the text she sent:

‘Mum I don’t feel safe anymore with <name of her brother> around it’s either he fixes his temper or I am going to be forced to leave’

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Aspergers and how to balance the needs of your children

My daughter just texted me from her bedroom.  This is the text she sent:

‘Mum I don’t feel safe anymore with <name of her brother> around it’s either he fixes his temper or I am going to be forced to leave’

I have spent the last day and a half overwhelmed by pain.  Pain, nausea, fog, drugs, pain, confusion, tears, pain…

They were both in the study, playing the piano. I could hear them laughing and shrieking. I had snapped earlier and told them to close the door. I can’t bear the noise. The pain is more than an 8 but not a 9.  But it’s too much. If I thought there was a doctor who could help me I would ask a friend to drive me there.  But doctors won’t help.

Suddenly my daughter ran past the living room headed for her bedroom. Half an hour ago they were running up and down the hall, shrieking with laughter. I thought that’s what this was.

But it wasn’t.  She was scared. He was chasing her with a nerf gun that he was threatening to hit her with. She slammed her door, he swore and yelled and then slammed his door.

Shellshock.

I did nothing.  I lay on the couch.

My son looks very normal, but he is not.  He has rage issues.  He can be violent.  He is 15 now, and while he has learned to control his feelings to a large extent, these events happen.  And I can’t control them.

Many years ago I lived with a violent man.  For many years. Because he told me he would kill me if I ever left, and I believed him.  Plus I had nowhere to go.  (Eventually I escaped, and no, not my husband).

When you live with violence you learn to be still. To not provoke.  Anything you do might upset him and he will hit you.  When you are teenage and living with an abusive man.

So when my son is violent, I revert to those patterns.  I be still.  I wait it out.   I protect my daughter and we wait.

I get no support with my son.  He seems so normal, and while he is quiet, he just seems like a typical computer nerd, gamer geek.  And he is that.  Until he explodes.

My daughter has been living with this all her life.  She has a lock on her door, put there by a good friend, and that made her feel safe for a long time.  But the door doesn’t shut properly because she hung a hat rack off it, and I need to fix it.  If I cant’ fix it, I’ll get someone else to.  Right now she is in my bedroom, where the door lock DOES work.  Because she is too afraid to not have a locked door between her and her brother.

My son is sorry. Genuinely. That’s the pattern.  He is remorseful. And he has made progress and continues to. I need to support him as he works on his temper and his rage.  But while I’m doing that I need to protect my daughter.  The damage done to her is huge.

She called her bestie’s mum to ask if she would come and get her because she was afraid.

You can imagine how that makes me feel.

I don’t know what to do anymore.  No one can help, because they aren’t here.  I have no support.  My husband started to leave when my son was born. He was a difficult baby. He was a difficult child.  It took me years to realise it was autism/aspergers, but I always knew there was something wrong.

My husband believed my son’s behavior had a simple cause.  My bad parenting.  That’s when our marriage really ended.  Long before Mixed Connective Tissue Disease or Rheumatoid Arthritis or anything else reared its ugly head.

So no, I cannot send him to my husband to live with him for a while, as my daughter was begging me to do.  His father wouldn’t take him. There is no doubt.  I can’t send him anywhere else either.

But I have to protect my daughter.  She is willful, and she is selfish, and she is dramatic. But she is not wrong about her brother. He is frightening when he is in a rage.  And she has been dealing with it all her life. Missing out on things because her brother can’t handle the crowds, the noises, the smells, the people, the sensory explosion that is ‘normal’ to those of us who don’t suffer sensory issues, is the story of her life.

We never even went out for dinner at a restaurant. The most simple things that most people take for granted were impossible for us.  My husband could walk away. I can not.

I have to find a way to take care of both of my children, but it seems impossible at this point.

And this will calm.  We will get through tonight.  She will probably sleep in my bed.  With the door locked.

That’s not OK for a 14 year old girl.  She has developed her own anxiety disorders.  She is scared of boys and men because she is scared of her brother.  She has been abandoned by her father.  She chose two ‘pseudo fathers’ but of course they can’t be her Dad.  She has realised this and given up on the male species completely.  She now believes she is gay and only spends her time with girls.  I believe that’s just a way to stop the boys hitting on her.  She is quite beautiful.  But of course I don’t know that for sure.  But it makes sense. She’s not afraid of girls.  She’s afraid of boys and they have done nothing but cause her pain, abandon her and restrict her.  Makes sense.

The hardest part about parenting a child on the spectrum is that their behavior is constantly misunderstood as a naughty, willful, misbehaving child.  People need to be educated.  Because a lot of parents of kids on the spectrum are the best parents you’ll ever find.  Trying desperately to balance the needs of their child with special needs, with all the other competing needs…their other children, their partner, the rude people at the supermarket who say loudly ‘He just needs a spank’

The hardest part is the lack of support and understanding. And empathy.  Sometimes someone smiles at you.  Gives you a word of encouragement.  It is so rare, and so appreciated, I often cry.

Mostly I just get advice.

He’ll eat if he gets hungry enough! (He won’t.)

He wouldn’t do that if you gave him a spank! (spanking doesn’t cure autism)

I’ll give him something to complain about!  (He already has something to complain about. He just can’t regulate his emotions and his senses the way you can.  You should be ashamed for trying to punish a child for having a neurological condition).

A bit of discipline at home would fix that! (I give him a lot of ‘discipline’.  Kids with Asperger’s need routine and predictable environments.  This has nothing to do with discipline.)

Conversely, when people meet him and haven’t seen a tantrum I get

He doesn’t have Autism (this from my family.)

There is nothing wrong with him (No, there is nothing wrong with him. He is just different to you and I, and he has trouble regulating his emotions.  Different is not ‘wrong’ but it can be challenging.)

And on it goes.

Asperger’s, like arthritis, doesn’t only affect the person who has been diagnosed. It affects the whole family.  My son melted down because we’ve done too much that took him out of his comfort zone.  He needs a quiet end to the school holidays.

But my daughter suffers too. I see the results of  her upbringing with her brother on a regular basis. Now she wants to go live with her girlfriend.  Goodness only knows what she has told her girlfriend’s mother.  That’s a conversation we need to have.

Just as soon as I can stand up, and walk a few paces, and drive a car.

Happy Easter 2016

This morning my ex-husband arrived to take our kids to his family Easter Celebration. I’ve been banished again this year, but that suits me just fine.  They only want me around when they need me for something. And things are OK over there at the moment.

I told both my kids they HAD to go.  At almost 14 and 15, they are close to the age where they no longer need to go to family celebrations.  My husband and I discussed it and decided 15 was the line.  At 15, if they don’t want to come, they don’t have to.

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The sky is falling! Well, the ceiling, anyway…

So this happened last night.

The ceiling in my garage right now

The ceiling in my garage right now. Pretty sure its not supposed to do that.

Cute, right?  I know things have been going too well around here lately.  The ceiling must have been feeling ignored.  Poor ceiling. Clearly it has been under a lot of pressure…I was just not aware.   Everyone has a breaking point, right?

The real reason is because I had my house appraised recently and was feeling pretty good about its estimated market value.  My plan is to live in this house while the kids still live with me, and then when they have lives of their own and aren’t that interested in hanging out with me anymore, I’ll sell up and downsize, and be able to own a nice little apartment.  The appraisal meant that plan was realistic.  Smug.  Yep, I was smug.

So the house had to fight back, right?

It did so relatively quietly. As ceiling collapses go, it was almost stealthy.  I was doing the dishes and I heard this crashing noise.  I have a drying rack in my laundry where, surprisingly enough, I hang wet laundry to dry.  I have to remember to keep the laundry door closed when I’m drying washing, because all of these dangly things are often irresistible to my big fat Siamese cat.  He often under or over estimates his pounce and brings the whole lot down on top of himself.

Forgetting stuff and me are on pretty intimate terms, so I heard that crash and thought it was clean, damp laundry, hitting my quiet dirty laundry floor, thanks to my beloved cat.

Crap! That means washing the lot again! Crap, crap, crap!  I’ll kill that little…ooooh! Shiny thing.

And that was that.

But it wasn’t the damp laundry being stalked and attacked by my cat.  It was the ceiling succumbing to the weight of the world.  Or the weight of something!

When I did my nightly door check (I have been known to forget to close my garage doors.  There’s that ‘forgetting’ thing again) I suddenly noticed half my ceiling hanging down in the garage.

Oooops.  Pretty sure that’s not supposed to happen.

I swore. Loudly.  I have PMS right now.  So I swore a lot, in fact.

Kids come running, so they can tell me off about swearing.  Cos I’m always telling them not to swear. Teenagers.  You know how smart they are.

They see the ceiling and kinda panic.

What caused that?  Was there animal in the ceiling? OMG!  Was there a person in the ceiling? There’s a person in the ceiling! It’s like that episode of CSI where there’s some creepy guy living in the ceiling, watching the woman living there, and videoing her naked!

This is my anxiety ridden teenagers talking now.  I’m thinking ‘If there’s some pervert living in my ceiling he really picked the wrong house. Nothing to see here…’

So you have to remember that my son is on the Autism spectrum.  Asperger’s. And suffers from very high anxiety.  He starts thinking it through and analysing every possible cause of why a ceiling would suddenly collapse.  NOT including for absolutely no reason at all.  In fact, he skipped right over the real reason the ceiling caved in – shit happens.  That’s it.  No more analysis required.

My daughter on the other hand couldn’t sleep.  She’s terrified that all the ceilings, in every room in the house are now all going to start falling in.   Can’t say I blame her. The thought had crossed my mind.  I let it keep crossing and go on its way. I don’t like that thought.  It’s fairly ridiculous, anyway.

I explained to her that the ceiling in the garage is different to the rest of the house. They construct garages differently (even though it’s under the roofline of the house) because, well, it’s a garage.

She accepted that for a while.  But it was a long night.

I called the insurance company this morning, who told me a builder would be out to assess the damage today.  That was at 8am this morning.  I haven’t heard a thing yet.  It’s 12:30pm.

He has until 3pm before I’m back on the phone to the insurance company asking where they heck he is, because I don’t want to spend another sleepless night reassuring my rather highly strung daughter that the ceiling will not fall.  (Chicken Little, anyone?).  I want to be able to explain to her that the ceiling has been assessed, has been deemed safe, and no more anything will be falling anyplace!

But I can’t do that if this builder guy doesn’t show up.  My claim was considered an emergency case.  Ceilings falling in aren’t generally good for the health of the occupants of a home.  I would have thought ‘emergency’ would have meant ‘drop what you’re doing and come here now.’  Clearly his definition of ‘emergency’ is different to mine.

I’m pretty sure it’s safe.  But ‘pretty sure’ doesn’t always cut it.

He’s got two and a half hours.  Then he’s getting a phone call. The insurance company told me his name.  He can run, but he can’t hide.  And remember the part where I said I have PMS?

Let’s all hope he calls soon.