Friday, December 15, 2017

Teen

I remember reading years ago that the word 'teen' was from the Latin root for angst or misery or something.  Lately I've been thinking about it because I feel like our lives are pretty hard - I mean, we are not breaking rocks, we have a roof over our head, we have MORE than just that, we have a good life but overall, it's just hard and challenging to put so much energy into constantly fighting and arguing and saying, but wait! We need more than this! This is not fair! And then I think they are going to get harder, maybe exponentially, when Anthony becomes a teenager and then an adult.  It is daunting, to say the least. 

Today we are supposed to find out from Anthony's center whether or not he can go there next Friday, the following Wednesday, Thursday, or Friday.  They are closed from the 22nd through January 2, but because we, and, I assume, other people who have their child in therapy and not at a typical school, have complained that it's hard on their kid to be off like they are not in need of this therapy.  The more I think about it, the madder I get.  This year there was a poll to take, will you send your learner in if we had these days available? So of course Mike and I filled the poll out YES for all the days, then we get a form that we can fill out last week, where we can say AGAIN what days we would like him to come, THEN we find out that if a therapist wants to work, maybe he can come.  Um.  As Mike said, that is so _____ stupid, who will come to work if given an option to NOT come to work? And to add insult to injury, they are closed next Friday, when the girls are still in school and when all three are taking part in the Christmas program at THEIR school, so we are assuming that we are going to find out that no therapist wants to work so Mike will have to stay home with Anthony.  I had already gotten a sub at work that day because of the program and the girls' early dismissal.  What can you do? I complained and I am told about all the things that happen during a shut down, floors cleaned and waxed, painting, etc., etc. and I think - who cares? I don't care! I understand what happens during a shutdown! They used to have a shutdown at my Dad's company, because they were a FACTORY! Hospitals don't have shutdowns! The place where Anthony and Veronica go to speech therapy is closed the day after Christmas and that's it.  I am also told that in order to stay competitive with the schools, they have to give out holidays like the school to get good therapists.  Um.  What schools have ABA therapists?  The whole CRUST OF THE BISCUIT is that ABA therapists are not teachers, that an ABA therapy center is not a school, what in the everloving hell?

So.  There's that.  We have accepted the fact that Anthony will probably be home, and we are planning accordingly.  We are doing rakishly okay with respite care.  We really like Anthony's new respite staff person, she is very nice, studying special ed, nice to the girls and to our damned dog, who is the neediest jerk you have ever met.  But Anthony is so challenging lately and there are times when he - oh, moves out of his seatbelt when you are driving, or lays down on the floor of the car, or drops down to the floor in the mall, or or or - just terrible behavior.  So we are working on it, as usual.  We have been taking the girls out on Monday and Wednesday so they can be home and maybe be a little more relaxed about going out and it's going okay.  His program manager came to the house for one of his sessions and gave the woman who does his respite some tips, I mean, maybe it will work out.  Maybe not, maybe this is just how it is, maybe he will just get crazier and crazier until he kills us all, who knows? WHO KNOWS? But presumably, as long as he doesn't, maybe she and he can do some stuff during the break and he won't be too miserable. 

I found out about this Parents Night Out at Easter Seals Crossroads through a Special Needs Parent group that I'm in on Facebook (which I'm not even on right now for Advent, it was making me too crazy and no kind of Christian). I emailed the person and called the other person and NOBODY got back to me, so I just printed out the forms and filled them out and mailed them in with a note about how NOBODY had gotten back to me.  The woman who runs it called me and said she was so sorry, blah blah blah.  Then she said Anthony is almost aged out of the program, in June he will be 13, and he could do a teen group but it's in Carmel, and it sounds like Anthony needs one on one care and they don't offer that so it's probably not a good option.  This is the first thing she says to me.  I'm like, okay well, how about the next six months, can we talk about that? She says, yes, but it might not work out for that either, because (and not in so many words) she says that Anthony's behavior sounds pretty crazy and they have 'medically fragile' people there and also neuro typical siblings who can be as young as six months old and they might be in danger if Anthony is there.  This is hard to hear.  First of all, all she has said to me is negative bullshit about my son whom she has never met and second of all, she sounds like an absolute idiot.  I mean, it's Autism 101 that you don't put the slappy 12 year old around the medically fragile six month old? And why isn't Anthony medically fragile, only the way that he expresses HIS disability is that he has some behavior problems?  I asked her if she had other kids with autism there and she said yes! They had many autism experts there! And behavior therapists! They had a whole autism department AND different rooms there and a sensory room!  THEN WHAT IS THE PROBLEM? I want to say, but I don't.  I said I find this to be a very negative reaction, that before you say anything you say all the things that could go wrong, and I find it especially negative when you only called me back after I called, emailed, and finally used the UNITED STATES POST OFFICE to beg you to get back to me.  And do you know what she said to me?  She said I'M SORRY YOU FEEL THAT WAY.  I mean, really! Who still issues that non apology? Don't we all know that's not a thing anymore? I said I'm sorry too! Sorry that you made me feel this way when all I get is negativity and bullshit from the regular world and you are a place for people with disabilities! I'm SUPER sorry about that! So I said, what is the next step? What else do you need from me? And she said, all Hoosier buttsore that I told her what time it was, that the next step was for her to do an assessment and then she would call me back.  I said okay I will wait for you, then she sent an epilepsy seizure plan and I sent it back and she sent an email that said "this is the confirmation that I have received the seizure plan". I was DYING to send an email back that said "this is the confirmation of the confirmation beep boop" but I didn't.  So we wait, if she deigns to get back to me, maybe he will be able to go to a Parents Night Out and then if he is badly behaved or has any problems, I guess she can say he can't go anymore.  Did I say this is a respite thing? That he "gets" to go to it because he has the Medicaid Waiver. 

He has the wrong kind of autism, I'm made to feel all the time.  I ran into a woman with whom I used to work a few weekends ago and she mentioned her grandson had autism.  I said oh how is he doing? She said he's great! He's on the Chess Team at his school! Oh, I always think.  Never mind.  But I was talking to Anthony on the ride home yesterday, I said you know Anthony, you have autism.  And that makes you behave in some funky ways, you have different reactions to things than the girls do because they don't have autism.  That's why you go to your school and they go to their school, you have different gifts and abilities.  I said Daddy and I love you and we are proud of you and we will never stop trying to help you, we will get through this! And Anthony said, wheeeeee youuuuu!, which I imagined as thank you, Mom, that support means the world to me.  I am going to keep repeating positive things until they come true, or I lose my mind and drive off the road, whichever comes first. 

Monday, September 04, 2017

Labor Day

Anthony is really putting the labor in Labor Day, if you know what I mean.  This child hates a holiday.  He has been hitting me a lot today, it is hard to take but I feel like I've said all I can say about it.  He's only getting bigger, I used to think we had to work so hard while we could so that he could ... not be so big and still be so badly behaved? I don't know, I feel like it's easier to take from a smaller person, bad behavior.  I get so, so down about it.  It makes me argue with everyone, makes me a bad mother, person, friend, certainly wife.  I'm still a good waitress but that's it.




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.