Thursday, April 20, 2017

April

Anthony is going to be 12 in two months! Crazy!

He is doing okay, he is hitting me less, which I think is a combination of him improving and also me not being around much.  I've been working a lot and busy with the girls stuff so we haven't seen each other too much.  He has been getting out a little bit more with his respite girlfriend, the weather has been better, they've been swimming and going to parks.  I wish he had more time with her, or with someone, but it's an imperfect system.  Even though his place pays pretty well, we can't find anyone to do this job.  He should get 12.5 hours a week of respite and we are lucky to use six.  We are trying, but it is trying, too.

Last night I took Maria and Felicity to Maria's first baseball game.  I was talking to this other mom, who also has four kids, Boys 13 and 11 and girls, 7 and 5.  This mom was saying how she is such great friends with other parents from school, how much stuff they do with other baseball families, which just makes sense, it seems, because their boys have played baseball together, been together a LOT for six months out of the year for the last seven years.  I was thinking how nice that would be, to be social and friendly with people because you have things in common, things that your kids do together so you do them together.  We just don't have that and it's too bad, because I really have always enjoyed being friends and social with people.  I don't think Mike cares as much but it feels really unnatural to me to not be friends with people.  It's a strange situation.

Anyway.  Anthony is going to be doing this bike thing this summer and you have to buy a bike, so I am going to ask people who would give him a birthday present to contribute to his bike fund.  I am looking into how much it costs, I have so much to do, it seems, recently.  I'll be glad when the girls are done with school and we can relax a little, ha ha just kidding!


Thursday, March 02, 2017

I Can Shine

Yesterday, Anthony's longest with him therapist (I'm trying not to say oldest), Pam, was saying how far we've coming.  Remember when he was lying on the ground for HOURS a day yelling and screaming? Look how far we've come! It made me feel really good, because we have come far.  Even though it stinks that he is pushing me and hitting me, it won't last forever.  I HOPE.

I just signed Anthony up for this biking program this summer, I am SO hopeful that he can learn how to ride a bike! Say a prayer it works, I really think he'd like to ride a bike!

Wednesday, February 15, 2017

February

There must be something nice to say, right? It can't be all bad.  We got Anthony some boots for Christmas and they fit but he kind of hates them.  We have to move him into some shoes that aren't Crocs, because he was barely putting his foot in them, it's winter, etc., you know, things were just bad with the shoes.  So.  I got him these boots and they were okay but not great because he'd wear them and 'tolerate' them at Little Star but he'd always pull his foot out of one and sort of walk on the sides of his feet and I was worried he'd trip.  Elizabeth, his respite girlfriend, took him to try on sneakers on Saturday and although we didn't end up going with the pair that she bought we were able to find a EXTRA WIDE (4E!) size nine pair of sneakers from Penneys and he is wearing them today.  So maybe that will be good.  I want him to be comfortable but he also has to wear shoes of some kind!  So I hope it works out.

He's in a good situation with speech and occupational therapy.  They each see him separately and then co treat for a while every week and it seems to be going well.  I like both of his therapists and they send me an email every week to say what they are working on.  His speech therapist is the same as Veronica's, and he has speech on Tuesday and her Wednesday but she REALLY didn't like me talking about Anthony on her time so now I get an email and everyone is happy.  Happier.  Ha!

My Uncle Leo send the kids gift cards for Christmas, and my Uncle Kevin sent money for them so we got some new clothes for Anthony, some long sleeved shirts and they are really cute.

He can be very affectionate, he does this thing where he holds and caresses your face.  He does it to me, Mike and sometimes to his therapists and it's very endearing.

Elizabeth, his respite girlfriend, is very nice and things have been going well.  Because I am making a positive spin on things, I won't mention that he threw his iPad out the window this weekend when he was out with her and we lost it forever.  Live and learn, I guess, we should have told her to keep the windows shut, especially if he is in the back, ha!  I have a nice and sweet old friend who emailed me and asked me if she could send us a gift to contribute to the new iPad.  We are okay and I told her that, but that really puts a positive spin on it, right? Isn't it nice how someone is always there to be nice and wonderful?

Here's some pictures.





Wednesday, February 08, 2017

Aggression in Autistic Tween

I am hoping this blog post will get me some help.  Anthony is 11 and he has lately started to really really push and punch me.  He punches and pulls my arm when I'm driving, most alarmingly and then today he slapped me full on in the face.  I have never done that to him, he has never seen that kind of behavior.  He doesn't seem upset, he seems intent on doing it.  I used to think it was a communication issue but now he doesn't seem to want anything, except to hit me! We are asking for help from his team at LSC and we are trying to work with his Occupational and Speech Therapists but so far, it is only getting worse.  It is only happening to me, which is terrible luck because I usually go get him from LSC.  Anything I search up, as Maria would say, seems to indicate my only option is to drug him but that doesn't seem like an answer.  If anyone has any real, solid experience or ideas, I'd appreciate it.  Also if anyone has any ideas about .. .what do you call it?  Sleepaway places? Nursing homes for children?  Just to type it makes me want to jump out the window.  Residential homes for children with autism, I guess.  To close, help! I need help!

Friday, November 11, 2016

Update

Halloween! He was Harry Potter, obvs.

Rolling around in the chair that I got Mike for his birthday
Good Lord! How could it be so long since I've updated Anthony's blog? I feel like I am the worst mother to him, and now I'm forgetting his blog too?  I used to be good at at least that!  Well.  I don't take so many pictures of him anymore, so often I need both hands when I'm with him.  He is - he can be wild, to understate it.  I hear myself telling people things - well, like the other night I was telling his speech therapist how I would like to work with him on maybe a schedule because he seems so crazed, sometimes, when we are on our way home.  I pick him up almost every day, and sometimes he gets really wound up, and he punches me/pushes on my arm so hard that I have to remind myself to not put my right hand on the steering wheel because I have nearly driven into traffic several times.
So.  That's a pain, right? I don't want to take pictures of it! So we are working on, as EVER, communication.  I feel like when he pushes me like that he really wants something.  I don't know what.  On his iPad the other day, he was saying "rainstick" and "trampoline" which are both things he has at Little Star.  So I thought maybe he is afraid every time when we leave Little Star, maybe we won't go back? So I am trying to be clearer about saying we are leaving now, we will go home, then have dinner, (go to swimming, whatever) and then TOMORROW you can go back to Little Star.  On Friday of course I can't say that but he has been going to music therapy for a while on Saturdays so I can say that, I guess.  Everything is terrible since we don't have anyone to do respite anymore.  There was a moment two weeks ago when I thought maybe we could have it but it was a false alarm because the person they thought they could get didn't drive, couldn't drive because of some sort of problem with their record.  MMMM kay.  So they were like, we have someone! But they can't do transportation! And I was like, um, okay but can they meet us at our house and go to the stuff that Anthony wants to do?  NOPE.  They were just supposed to come over and I guess, stay at the house with Anthony, which would be great ON OPPOSITE DAY.   So anyway, that was disappointing.  Then last night, Mike and Anthony were getting ready to go to swim like every damned Thursday of their lives when our case manager just STOPPED BY to say that she needed to schedule a meeting.  They were late for swimming because of this pop in! And she couldn't really say when she could meet but she just ... came by, I guess to make them late for swimming or maybe that was just a lucky happenstance.  UGH.  This medicaid thing is awful and it makes me SO PARANOID - I think, they get all these people off the wait list and then they say you have THIS MUCH MONEY! Yay! But that translates to a certain amount of hours because the places that you go through only pay their people like $10 an hour, $11 if you're lucky, although $11 was what the last nimrod we had made and she was awful and I still get really mad when I think about her.  Anyway, they don't pay well and they can't hire anyone and then we can't get any care for Anthony, it's been through MOST of the year, and that money - guess what happens to that money?  It all just goes away from us and right back to the stupid state, even though it is DUE to ANTHONY.  So I guess if I were Indiana, maybe I'd dole out a lot of money but to a lot of people so that it doesn't do any good to anyone and then I'd get to keep the money?

We have been struggling a lot because we used to have respite care and now we don't and Anthony suffered this giant setback when he had to stop going to Little Star and we are just trying trying trying to get back to where we were, which wasn't great but it was better than it is now.

We do have happy moments, he is doing very well at Little Star and he is doing well by going to speech therapy/occupational therapy on Tuesdays but I am impatient.  I want him to do well everywhere.  I want him to not scream so much.  I want him to be toilet trained at night.  I want him to be more lovable to the girls.  As Anthony says with his iPad all the time, I want.  I want.


Friday, February 26, 2016

Friday Update

Last Lent, I wrote about and said nice things about one of my kids each day during Lent but this year I have given up sweets and am saying a rosary every day.  But I thought why not update on Fridays?  Maybe I can do it.

Anthony is doing fine, the last few weeks I've been taking him to swim because we don't have respite staff right now, ugh that is driving me crazy but I am breezily going by it.  Last night I went and exercised at the Y for a little bit while he was swimming but I got back in plenty of time to see him.  He looks like he is doing everything but swimming and I was saying that to one of his teachers and she said look how hard he is working! It takes a lot to hold up his hips like that!  He is great! So that was nice and a good reminder, too, that even if it doesn't look like he is working hard, he always is.

The weekends are super hard but everything else is going fine.  He has been going to Costco with Mike and has been helping!  Like Mike will tell him to get something and he will!  This feels like a miracle.

Here's his school picture and a rare picture of the four of them.  He is getting really big and tall.  He weighs a ton, he is falling away to a ton, as my sweet grandfather might have said but we are just trying to make most of his snacks healthy ones.  What else can I do?  His hair is getting really excellent but Mike doesn't love it.  He never lets us comb it so it gets kind of janky but mostly I think it's so cute, just like him.



Monday, February 01, 2016

February

Last night, Anthony had a seizure.  It was the same in some ways in that it was at the end of a long and rough day.  It didn't last long.  He slept a lot after.  But it was different in some other ways.  I think he was coming down the stairs when it happened, because before we knew it, he was at the bottom of the stairs, lying down.  He never lies down, but he had several times that day, which always makes me think, crap!, I should have known! Also he didn't throw up and he always throws up so I went looking for it and didn't find it, which is a weird thing to do.  He seemed to have a mark on his head and we thought, did he fall down the stairs? I was right in the kitchen, I never heard a loud noise.  It is a little too mysterious for me.

He has been doing this thing lately where he sort of bashes in to me and I hate it, I'm afraid he's going to knock me over.  But then he has a seizure and I think, does he know? Is he begging for help? I'm going to talk to his therapists about putting in some icons on his iPad for "I don't feel good" or "I have to lie down".  I don't know, it's not perfect but I want to do something.

Anyway, we are as usual plugging along.  I guess - I don't know, I feel like some days are so rough all we can do is maintain.  I feel bad when I feel grateful he has a seizure because I know that means he'll sleep well.  It's messed up but what can you do?  He has been doing very well at swimming and well at OT, he's doing well at Little Star, and we are working on it at home.  And now it's February which is closer to March and Spring!