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Julian's Mom

Life & Events > I'm with Neurotypical
 

I'm with Neurotypical

You know, I have tried blogging at least three or four times over the last week or so. But each and every post was abandoned about halfway through.

I've been really scatterbrained lately. A few really busy days and a couple of really stressful day mixed with some really bad days for Julian has made me less than coherent lately. Even now my mind feels like a ping pong ball, jumping from thought to thought, always trying to stay one step ahead, always thinking of the next person I need to phone, the next thing I have to do...

And I haven't been feeling well.

There is a monster of a cold going around. I had it last week and the cough is hanging on. Just when I think I've finally kicked it, I'll feel a bark starting in the back of my throat. The girls have been sniffling and sneezing some and Julian is just starting to show symptoms. I was really hoping, by some sort of miracle, that he would not get this cold because a common cold for him almost always means pnuemonia and it's a bit early in the season. Which really means that he will have it multiple times.

*sigh*

Ever take an autistic kid to have a chest x-ray? Yeah. Not fun. For either of us.

There really are few things worse than your child not being able to breath normally, no? It makes me think of children born with Cystic Fibrosis. I can't imagine it. I really can't. Makes what I do on a day to day basis seem like a walk in the park.

I've also been a bit uncomfortable.

I wasn't going to blog about my doctor's appointment last week simply because I sort of limit this space to being Julian's Mother. Honestly, sometimes logging on and blabbing freely about Autism is the only thing that keeps me from losing it.

However, it has been on my mind and I haven't been feeling too shit hot, to be honest with you.

Basically, the ultrasound showed that I have endometrial polyps. Not the prolapsed uterus we thought we'd find (although she isn't exactly sitting up very well, either!).

I will have another ultrasound in about five or six weeks to check on the growth of the polyps and then I will likely have them removed and then biopsied to see if they are cancer.

You know what the truly stupid thing was?

The whole time my doctor was talking to me, all I could think was, "I don't have time for this. I have shit to do."

I talked to him about a hysterectomy. I'm still young. I need a uterus to make hormones. The surgery is not without it's risks. All that good stuff. But he is a good listener and told me he understood my desire to have it done with. I can't be running in and out of the doctor's office every six fucking weeks for another test and another follow up.

Did I mention that I have shit to do?

*sigh*

Anyhoo, those polyps hurt! I've tried to milk it for all it's worth but when you live with children, milking it doesn't really work.

Turns out they really don't care all that much.

Ha.

The whole time I've been tapping away here, I've kept one eye on the little battery in the corner and it's been steadily losing juice. Do you think it might have anything to do with the fact that I don't have it plugged into the wall?

Did I mention I was feeling a bit scatterbrained?

This weekend coming is Canadian Thanksgiving. My sister will be visiting my parents. Have I ever mentioned on this blog that I don't speak to my sister? Or rather, that she doesn't speak or communicate at all with me?

It's a long and sordid story that I am far too ping pong-ish to get into tonight but suffice it to say that she wrote off our entire family a few years ago by sending us all scathing letters about the many and varied ways we had fucked her up her whole life. Then she told us all that she didn't want to have anything to do with us.

She now talks to my parents and visits from time to time. My folks are terrified of losing her again. But she still doesn't talk to me. I sent her a letter when we first moved out to the ghetto with my new addy and some pictures of the kids. A few months later I got a formal thank you card. Like the kind of card a really distant relative would send you after you sent flowers to a funeral.

This means that I won't have a Thanksgiving this year.

The kids will be with their Dad and his gigantic family.

One of my bestest friends, Sarah, will be away for the weekend so I can't crash her family Thanksgiving.

Dirk is going to his sister's place out of town.

I will go to the truck stop.

I can't remember the last time I had Thanksgiving. Honestly. I know it's been at least a few years now.

So, instead of feeling sorry for myself (okay...I have felt at least a little bit sorry for myself) I've been trying to think of things to be grateful for.

Maybe I'll take my polyp out for a brownie or something.

I finally ordered some shirts for Julian and I the other day and have been keeping an eye on the front door ever since. I decided against the super funny one I mentioned in my last post and instead bought a hoodie for myself that simply says, "Autism Awareness" on a puzzle piece and a t-shirt with a really pretty butterfly on the front that is made up of puzzle pieces.

For Julian, I chose three t-shirts. I was wary of the hoodies because I couldn't actually run my hand up inside of them to check for seams and softness. He can wear an inside out thermal shirt underneath a t-shirt (although, lately he's been all about the flannel pajamas. It's really hard to get him to wear anything else. I used to reserve the flannels for night wear but recently stopped bothering. If he's happy, we're all a bit happier).

ANYWAY....(I'm actually starting to annoy myself. Maybe this is what having ADHD is like...)

The first shirt for Julian has a really cute cartoon boy with a cape on and it say,

AUTISM IS MY SUPER POWER

The second says,

WARNING! I HAVE AUTISM AND I KNOW HOW TO USE IT

And the third,

I HAVE AUTISM. WHAT'S YOURE EXCUSE?

Because I've been having such a hard time coming up with titles for my posts, I've been resorting to using lines from the other cool shirts that I didn't buy.

The "I'm With Neurotypical" one made me laugh.

I think tonight I will leave you with an autistic moment of the day.

I took Julian to see the Occupational Therapist earlier this week. You will all no doubt remember my frustration following our first meeting.

Well, I spoke to her on the phone in between visits and we got a lot cleared up. It would have been helpful had we had that conversation *before* we started treatment, but whatever. Better late than never, right?

Basically, the initial assessment takes at least three visits. So day one was just a standard fine motor skill test. Again, would have been helpful to know that so that I wouldn't need to sit there worrying that we were wasting our time and a precious treatment day.

After the assessment is over, Julian will receive at least ten more sessions with her. Then we will break to allow time to implement strategies at home and see if and how they work.

Then we will meet again and go over goals and results and he will likely have another eight to ten sessions with her.

I was pretty stoked.

*As an aside, I read an article here on mybloggers this afternoon by hayduke about politics. I often have a hard time following political posts because I don't keep up with American politics much. However, he was writing, in part, about healthcare and I think it's worth mentioning right now that the occupational therapy I was describing is covered under our provincial health care plan. Which means, in short, that I don't pay for it.*

So, getting back to Monday's appointment.

It was really productive but really uncomfortable and terrible for Julian. She was testing his vestibular sense. Turns out, it too is all out of whack.

At the end of the session, he was allowes to sit at a little desk and paint. Julian loves that little desk. I think it might have something to do with his love of being contained. This desk is designed to really hold a child in place.

So he's painting and the OT and I are talking and going through the parent part of the assessment.

Julian is a perfectionist. There is a good dose of OCD in his Autism. If he can't do something perfectly the first time, he gets really, really, REALLY frustrated.

And pissed.

And he was already pissed at the OT because of the uncomfortable exercises and tests.

So, while we are talking Juilan is getting upset about the monster he is trying to paint.

He threw his little arms up in the air and yelled,

"AAAAAHHHH!"

The OT turned to him and said,

"What's wrong Julian?"

"I'M HAVING A FEEEEEEELING!"

"What feeling are you having?" she asked while trying to direct him to the picture board describing feelings.

"I DON'T KNOW! BUT I'M HAVING A FEEEEELING!"

Try that the next time someone is pissing YOU off.




posted on Oct 5, 2011 8:20 PM ()

Comments:

If the spa is open on Thanksgiving day, I'd totally go there! Pick up a dinner to go and a bunch of good movies and enjoy the peace and quiet! You deserve it!
comment by maggiemae on Oct 11, 2012 7:21 PM ()
Hurray. You finished the post! Now, what else is new?
comment by solitaire on Oct 14, 2011 6:16 AM ()
The idea of jumping on a plane and joining you at the truck stop is very appealing...

If you feel at all sad that you are alone for Thanksgiving, just think about me, very unhappy that she has to do the usual in-laws dinner. MIL is a poor cook. The kids and I are the youngest people there. I used to like my SIL, but I've grown tired of her childishness and excuses on why she's fat and depressed. I don't want to be bossed around by the aunt-in-law (you aren't the boss of me!), and grandmother-in-law is sadly going downhill fast. Not sure if BIL will be there - he went to Russia to visit his Russian girlfriend because Canadian girls aren't good enough for him (apparently).
comment by crazylife on Oct 7, 2011 11:55 AM ()
My dad did the same thing - if my sister was coming to visit him, I wasn't welcome there. He should have been trying to bring us together because after he died there was nothing but bitterness on her part and now no common ground at all.
comment by troutbend on Oct 7, 2011 9:25 AM ()
I love the shirts you got him... Perfect!
You can spend your thanksgiving with me if you want!
Maybe I'll take my polyp out for a brownie or something. Although this is a serious matter that made me laugh out loud.
I hope everything comes back ok, and I have to agree, your healthcare sounds much better than ours! I hate insurance with a passion...
comment by kristilyn3 on Oct 6, 2011 10:10 AM ()
It's okay to laugh. I do all the time. I now refer to the polyps as though they were people.I blame bad moods on them and general bitchiness. Laughing about it somehow makes it better.

I would *love* to spend Thanksgiving with you! Can we have celebration roast? I will bring Amy.

Sit in a ER waiting room in Ontario and as *soon* as someone even comes close to complaining about the wait time the very next thing someone will say is, "Well, at least we're not American!" and everyone will agree. I absolutely can NOT imagine what it's like to need care or a service and not be covered for it.

Although, I think we have to pay a deposit of $25 for crutches and an ambulance ride is $50 *if* you called the ambulance. But boy oh boy, do people complain about THAT!
reply by juliansmom on Oct 6, 2011 11:12 AM ()
Just skip the whole thing and continued with life.Use your own mind.Need someone to tell what to do.Well this is not good.Go for it.
Do your own thing.It is just another day.You can have turkey any day for me passed who cares.Lived it.At my age why should I worry.
comment by fredo on Oct 6, 2011 10:10 AM ()
I have skipped Thanksgiving for last three years or so. It's not the turkey I miss...it's the family.
reply by juliansmom on Oct 6, 2011 11:14 AM ()
So long as you keep your ovaries, you will still produce hormones.
comment by redimpala on Oct 6, 2011 8:42 AM ()
I think that the main concern is that without a uterus, they are unable to screen for certain types of cancer. And the risk of a prolapsed bladder increases, among other things.
reply by juliansmom on Oct 6, 2011 11:06 AM ()
I like Martin's suggestion. Let me vote for the hysterectomy. Hormones are
available. My sister did not have one and her uterus and her bladder fell
out. gross. It is so bad now that she is old that they are
afraid to operate. I love that line about the feeling. I may try it with
the V. A. to you and to your girls and Julian.
comment by elderjane on Oct 6, 2011 6:07 AM ()
You *must* throw your arms in the air when you shout, "I'M HAVING A FEELING!" to get the right effect. Maybe it will do the trick.

I've heard of people's bladders and uterus falling out. It sounds horrific. Your poor sister...
reply by juliansmom on Oct 6, 2011 6:47 AM ()
please explain vestibular sense, I have no idea what that is. I'm having a feeling! I love it! and going to a truck stop for thanksgiving? come on! why can't you go to your parents, because your dumb sister is going? I think you should go to your parents. perhaps your sister will be filled with thanksgiving for her family! I know all about family problems, believe me. But i have straightened them out finally. I just hate the idea of you being alone on thangsgiving. if i had the money I would come up there and do the truck stop with you! we could even dress like truckers!
comment by elkhound on Oct 6, 2011 4:21 AM ()
Mary, my sister won't even facebook friend me!When she is visiting I am not welcome at my parents. Like I said, they are really scared of losing her again and will jump through hoops and walk on eggshells to keep her happy. It used to piss me off but now I don't really care.

I would love to go to the truck stop with you! It's actually really good and a lot of non-truckers eat there. We would have so much fun!

We all know of the five senses...taste, touch, sight, sound and smell. We actually have two more...proprioceptive and vestibular.

The proprioceptive sense is where we feel our bodies in space. A lot of people with Autism can't feel where their bodies are, to varying degrees. This is why they sometimes toe walk when they are excited or upset. They may not feel grounded or like they are floating. This is why Julian prefers very heavy footwear like boots. It is also why he likes deep, firm pressure on his body. It feeds his proprioceptive sense and helps him to feel where his body is.

The vestibular sense is our sense of balance. Ever have an ear infection and felt stumbly? That's your vestibular sense out of whack. Julian's vestibular sense is all out of whack which means that he feels dizzy a lot of the time and has poor balance and is clumsy. This is true for many people with Autism. It can also go in the opposite direction (as all of the senses can with Autism) and some people with ASD seek out fast movements and spinning, etc. in order to feel grounded.

Hope that makes sense.
reply by juliansmom on Oct 6, 2011 7:18 AM ()
'I HAVE AUTISM. WHAT'S YOURE EXCUSE?' I vote for this one!!!
Why not spoil yourself Thanksgiving--a bubble bath (come on your polyps will love it!!!) Get a small turkey and cook it--also sweet potatoes, cranberries, bake a pecan pie--eat your fill---nibble on left overs all weekend--relax--read a book--nap--do your nails or get them done--why not???
comment by greatmartin on Oct 5, 2011 8:33 PM ()
I love your idea with the exception of cooking the dinner. I think I will take myself out for a Thanksgiving dinner with all of the trimmings but none of the work.I only felt sorry for myself for a moment or two. Once I realized that I would have some alone time (which I love) I got pretty excited. I actually have a gift certificate for the local spa and love the idea of a Thanksgiving pedicure....
reply by juliansmom on Oct 6, 2011 7:22 AM ()

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