Thursday, February 04, 2016

An Angry non-verbal Autistic Child and an Exhaustic Mother

When my youngest son was diagnosed with autism (I am one of those moms who don't remember the age,  around 2or 3ish...heck I can't even remember the exact weight of my three babies!  *sigh*) I knew my life would be different than the average persons.  I am a very introvert person...sometimes I wonder if I would have been diagnosed with autism or Asperger's if they did that sort of thing when I was younger.  Or at least if it had been more common.  I have found that having an autistic son has forced this 'hermit' to come out of my cave a bit. 

I have always thought I lucked out.  I may have a child with severe autism, but he's so happy!  I remember when the early interventionist first came to our home to meet Elijah and before she even laid eyes on him she said she knew he was a calm happy child because most of the homes she'd gone too the parents had no plants, no curtains, and no ornaments or picture frames up, because their child wouldn't allow that.  He was a blessing to work with, because he was just so happy!

He's still happy.  I always tell people he's 99.99% and the only reason I didn't make it a full 100% is because in March every year he goes through a sort of winter blues thing that lasts for about a day.  But as of late, he's just so irritable!!  And I try so badly to make him happy and it is just about nearly impossible.

But then what does he have to be happy for?  He can't look at the world like others do.  He has a mom and dad who love him more than anything, he has a home with food and warmth, and a nice bed to sleep in. 

But he also has the inability to communicate! He's 14 and he can't do PECS, he can't sign, and he can't talk verbally!  He must be so frustrated!!!  I think even that would drive me crazy!!  Even when I'm by myself and stub my toe or something I use my words to express my frustration. Elijah can't do even that!!!!  He just has to hope that someone realizes what has him upset.  It has to be a frustrating world to live in!

And what else?  Well he has extreme eczema in his head that if his hair even gets an inch long it gets so itchy he scratches it until it bleeds!  I asked the dermatologist about this and his solution:  it needs to be washed 2 or 3 times a day!!!!  Seriously!!!  Take a dry head and dry it out even more???  My mom suggested baby oil and it helps a lot, but still if you don't remember to do it all the time it only takes one missed time to flare up again.  I'm not superwoman and then I spend the next few days beating myself up about forgetting!!!

Of and what else?  Having autism and the inability to communicate and eczema wasn't enough!!!  no, no!  He also has hidradenitis Suppurativa  which is a chronic boil condition.  Right now he has at least 10 boils on his body!!!  The dermatologist gave me pills for him (next step is surgery).  You wanna know how I have to give him the pills?  I practically have to abuse the child!!!!  I have to hold his head back, stick two fingers in his mouth to hold the pill back in his mouth and hold his tongue down, and pour water in and then hold his nose until he can't even breathe! It's a nightmare that doesn't guarantee I will have fingers when the ordeal is over. The pills can't be mixed with anything daily and the only thing he'll take it mixed in is dairy! So guess who hasn't been getting his pill?  I just can not do this....I can not take a child who is angry already and make him angrier! 

Have I mentioned that he is 6'5" and weighs about 300 lbs!!!! 

So I contacted his psychiatrist and he said you know there is such a thing as a compound pharmacist that can take those pills and make them taste like a piece of candy.  What?????  Why the heck wasn't I told this.  So he contacted my pharmacist, who contacted another pharmacist and they did a bit of research and to get these pills compounded would cost $100 for 10 pills....I needed about three months worth so basically $1200, and not covered by insurance!  Great!  So we went to work trying to find some way to make this possible!  In the meantime the 2nd pharmacist called me and said so have you ever tried peanut butter!

Peanut Butter!  Me, the dermatologist, and the 1st pharmacist scoured our brains trying to come up with a way for him to take this pill and we never thought of peanut butter.  And it works!  Hallelujah! 

However is the meds helping his boils...well it certainly doesn't seem to be!  But maybe it takes time, so I'm going to keep trying it.

Most people think of Canada and think free healthcare.  And that's true.  I can't vouch for other places, but here in this small community I live in, the hospital is closed half the time.  Our family doctor, an awesome doctor who was doing the work of at least 2 doctors, retired.  And although there are other doctors in surrounding communities they aren't accepting new patients.!  We have an on call Doctor, which is all the doctors who take turns being on call.  My son got sick and I called one and the secretary tells us they can't take us because we live out of their zone!  I'd love nothing more than to have a Doctor so I can make an appointment and have a full check up for Elijah. 

So the last month or so Elijah has been so angry for more days than he's happy.  The last two days he's been lashing out at me.  It gets pretty stressful!  I go out of my way to try to make him happy.  But really the only thing I can do is wait it out, stay out of his face, and try to make it through.  But I can tell you that for me, it is really taxing on the nerves.

I'd love to hear from other mothers of autistic children.  I think a support system is so important.  yesterday my husband took the day off work to help me out, and I don't know what I would have done if he hadn't done that.  Support is key here and if anyone wants to talk I'd love that.


Thursday, March 14, 2013

the ho-dee-hum blues of my autistic son

My little Bug has been very lethargic today.  he'd ripped a little paper, but it's been confined to one spot.  His cheeks are flushed, and he's just laying round.  all smiles when I come near, though, so that's a good thing.  But I hate when he gets this way, because he gets too comfortable and don't want to get up when he needs to go to the bathroom, so now his chaise is filled with pee and I needed to soak it down to clean it and stand it up to dry.

Speaking of the chaise.  These are his absolute favorite chairs!  So when the last one broke I was scouring the internet looking for a second hand one that I could buy, because the way Buggie goes through chairs and sofa's we would be living on the street if we had to buy a new one every time we needed one.  So I searched for months after having to throw the old one out and finally at Christmas we found one cheap ($150 or somewhere around that), as apposed to the nearly $1000 you'd have to pay for a new one.  He loves it despite the fact that it doesn't have all the appeal of the older one (not as comfy and has no arms).  yesterday the darn thing broke, here we are less than three months after Christmas and we need a new one.  My DH is going to try to fix this one so we can get at least another month out of it, but I feel like pulling my hair out.    It's like flushing money down the drain, but he does enjoy them for the small while we have them, so maybe it all balances out.  Even so he still loves the chair even though he's practically sitting on the floor in it now.

I wasn't feeling too good today so my DH came home early so I could relax a bit.  Feeling better now.  My daughter says her throat is feeling weird so maybe we are catching something...that would explain Buggie's lazy day and red cheeks.

 We have snow coming our way through the night, so maybe we will wake up to a white ground.

We shall see.


Wednesday, March 13, 2013

And here we are

So here we are halfway through march break.  Yesterday DH took the day off work and we took a couple hour drive to see his sister who had a heart attack and is waiting for surgery.  It was a nice drive and I must say it is so much better being able to go places and know that Bug (my youngest son) will be able to hold himself until we are able to make a pit stop.  If he could he'd drive around all day, I do believe it is his favorite thing to do...and that is saying something, since he lives for ripped paper. 

I'm serious he has become so obsessed with ripping paper that he does it all day long if you don't stop him.  Another favorite thing of his he likes to rip is aluminum foil.  It's not so much the ripping he likes because he will sometimes ask me to cut the paper for him.  After it's ripped he has a favorite 'toy', the very top lid off a wrapping paper storage tower, and he will put his paper in this and put it close to his face and feel the paper raining down on his face to the lid or put it near his ear and listen to it fall. 

Whenhe's finished ripping enough paper to fill the lid he will play with it a few minutes, then spill half of the paper in the floor in front of him and then add some to the lid again, after he is finished playing for an hour or so the floor is so full of paper that my house would go up in flames if someone were to drop a match...I end up with quite a paper rug!  I will have to post pictures soon, so you will see what I mean.  and the dog loves it...she rushed through them and they go flying everywhere.  *sigh*   certainly no fun to clean though.

Anyone else out there have a child with autism that has this crazy obsession or something similar?  I would love to hear your stories.


Tuesday, March 05, 2013

It's been a long time

It's been a long time since I've written on here.  There are lots of things that have happened in my life.  I am going to try to be more frequent on here.  I surf other blogs and find them helpful, so maybe my blogging will help someone too.

Friday, April 03, 2009

Too long gone

There is no excuse for not posting anything lately, except that I am the queen of procrastionation!!!!

Things have been fine in the Hill household.

With all threee children in school one would think I'd have completed a couple of novels by now, but I keep procrastionating and never get anything done.

I am hoping to change that now as I get my act together and try to accomplish something over the next few months.

Time goes by so quickly it seems like yesterday that I was a teenager and time is not going to stop just because I want it to. I do not want another year to have come and gone and me to have no writing to show for it.

I am currently working on a children's novel, working title: Saving Grand Maple Ashlar. It is basically a fantasy novel that started out as a story I told my children centering a round a tree in our back yard. This story idea has been weighing on my for over two years until i finally have decided that I need to just write the dang thing so I can move on to something else.

So I am off now. Children will soon be returning from school.



Monday, February 18, 2008

I need to get my act together

it has been so long since I've written on here.

Well the Pediatrician says My oldest son has aspergers...March we have a final appointment before full diagnoses. I must say I have considered cancelling this appointment because my son fears having anything wrong with him. He's to the point that he won't sit next to my younger son because he doesn't want people to think he has autism too.

He's doing much better in school...aside from trying to make deals with the teacher to get get out of detention and having to do his work.

Any suggestions, advice, comments on this subject would be greatly appreciated.