Too Good To Be True?

I just got home from meeting with the account manager at the nursing agency Little Mans' CMS nurse referred me to. I went in thinking what the heck, it was worth a shot but not expecting much. Let's just say the meeting had me in tears. Tears of relief.

Apparently there is a program for special needs kids in this state that amazingly has not overreached it's funding. There were changes during the legislative session this year that may help me so drastically it will be truly a life changing help.

If things work out, which the account manager and nursing consultant who processes the claims and paperwork think they will, Little Man will have a Personal Care Assistant for a few hours each evening. Someone who can provide constant supervision, someone to help him with his daily needs - bathing, tooth brushing, toileting - and to keep him safe. Someone who will allow me a chance to do homework, housework, help Beans with his homework, cook dinner and all those millions of things you take for granted until you have a child who requires such intense constant supervision.

AND, more than I could have imagined. They provide an 8 hours rest/sleep period for sole caregivers. This means someone will be here overnight to ensure that when he wakes he doesn't get into trouble, isn't destructive, doesn't get hurt and doesn't get out of the house! OMG I don't even know how to turn myself off of this constant on guard state I live in. To be able to actually relax knowing that he is safe, wow.

I know to most that sounds like such a luxury - having someone get up in the night with your kid instead of you - but when it's all you all the time, your children demand such intense energy and time and they get up frequently me being able to get real sleep would be a huge quality of life improvement.

It hasn't been approved yet and I hesitate to get too excited before I know for sure but the people I met with today seemed pretty confident it will be approved. This assistance could start in as little as a couple weeks depending on how quickly I can get the kids physicals done with their pediatrician. Please cross your fingers with me that I can get this help. I love these boys immensely and I'm stretched way to thin.

Finding Resources

Well we made it through the weekend. It was probably our hardest weekend in a long time but we made it all in one piece...or as close as possible. ;) I was so happy to go to school today and immerse myself in my classes in the land where autism and tube feedings don't exist.

When I got home it was time to get working on a plan. I contacted our local CARD office (autism center) and requested their help. She is requesting that I set up a team meeting with Little Man's teacher, the CARD liaison and me. We'll go over behavior plans and resources and see what we can come up with as far as handling his behaviors and issues with unstructured time.

Then I contacted a nursing service the kids' CMS nurse referred me to. Mainly I was hoping to find someone who can administer Beans' feedings when I'm not around as no day care center or after school program is willing to take on that liability. While on the phone I asked if they did any sort of personal care support for autistic kids and what do you know - they do! I'm meeting with the intake specialist tomorrow to begin the process. There are a lot of hoops to jump through but the nursing service gathers all the information and then will petition insurance to cover it. Cross your fingers here!

Lastly I contacted the local Association for Disabled Persons about their Medicaid waiver program. There is a long, long wait list (5 years) but if - and it's a big if - Little Man is approved it will open a whole range of services available to him. Respite care, incontinence supply coverage, personal care assistance, behavior specialists, and life skill support among other things. They do not provide services for people with autism spectrum disorders, they have to have a diagnosis of specifically autistic disorder which I'm fairly certain he does. They'll be sending me the intake packet then we'll have an interview and hopefully, hopefully at least Little Man will be approved. This will make an incredible difference in what is available for lifetime support and independent living for him.

All of these take time to process so I'm hanging on by a thread but as long as noone comes along to snip it we'll make it. I may not be sane at the end but I wasn't sane when I started either. ;P

Desperate - How Do People Do This?

Today was one of those days that really make me question everything. It was a terrible day with Little Man. I really don't know what to do. He's not being aggressive thank goodness but I really don't know if I can handle this any more. I know I'm short tempered because of this cold but I am really at the end of my rope. I can't stress how desperate I am for help right now, something, anything.

Today he used up an entire roll of dental floss tying the house up, broke a keepsake of mine that is irreplaceable, hid my credit card so he could get a new toy (I don't think he was able to use it but he tried online), almost ruined my laptop by being too rough with it, smashed his head into the couch and bruised his face just by playing too rough and out of control, completely trashed the kitchen spreading shredded cheese everywhere - and I do mean everywhere - when trying to get a snack. He's so destructive, I cannot handle this. And I don't mean oh this is hard, I mean I am desperate.

He'll be 10 in a month and he's still like a toddler in so many ways. I just cannot be with him every moment and he's obviously too big to stick in a pack n play or something when I can't be with him. He doesn't have any concept of respect of other people or their things, he doesn't mean to be bad but he's constantly destroying or taking things. Punishment makes no difference whatsoever. Therapy hasn't made one bit of difference in all the years he's been in it. I think it's rather pointless to be honest. If he can't generalize real life practice, how is he suppose to generalize conversations to a real life situation? He can parrot everything back but none of it actually sinks in.

Tomorrow I'm going to Walmart and buying a lock with a combination and put everything I can think of that he destroys in our coat closet. All school supplies, Blade's tube supplies (he's obsessed with water and loves to run water through the feeding bags or rip the tubing off and run water thru them), and everything else I can think of.

How am I supposed to handle this? How do you teach a child not to do these things when he doesn't understand? Obviously I've tried telling him why not to, showing him alternatives, punishing him but it does no good. Not even momentarily. I really don't know what to do or how to keep him safe. Surely I can't be the only person who's dealt with this. I hesitate to even admit this but today some really scary thoughts passed through my mind of how in the world can I keep him at home when I can't keep him safe? He's getting bigger and can carry out much more complicated ideas but puts himself in danger if not constantly watched. I really don't know what to do and no one has answers. How do people really live like this and keep their child safe?

Funny Little Side Note

I was stressed out on Tuesday with Beans' appointments and having to miss class. Well I got back to class on Thursday and I've already told you how understanding my English professor was. What I forgot to tell you about was my nutrition class. Guess what they studied that day? The digestive system of all things. Terms that I've come to know on intimate terms - esophagus, epiglottis, motility, peristalsis, esophageal sphincters, pylorus, duodenum and jejunum among others. I guess Beans just figured he'd been giving me that lesson for years and if I hadn't learned it by now an extra day wouldn't make a difference. Funny how things work out. LOL.

A Phone Call from School

The day was chugging along as normal. I finished my psychology class and was enjoying the break between classes. I checked my cell for messages and there was on from Little Man's school. *sigh* Last year I received multiple calls a week from his teachers but this was the first time this year. Of course, it's rarely a good thing when you receive one of these calls and today was no exception. Little Man was having a bad day. Tearing up papers, throwing things and yelling. His teacher said normally she'd just deal with it but she had to leave for an appointment and the parapro in the class couldn't deal with Little Man and the other students without her.

Instead of heading to my sociology class I had to walk right out the door and go pick him up. My first instinct in situations like this is punishment - and not light ones. On the drive to the school, however, his teacher, Ms. R, said she felt strongly that his behavior was due to the autism and a lack of ability to communicate rather than strictly a behavior issue. I told her that I'd felt the same but was having a hard time understanding how a child who is so verbal and with a normal IQ was unable to grasp simple concepts - asking for help, telling someone when he doesn't feel well, things like that.

Her answer both confirmed what I've felt in my heart, what I've read over the past few days in the studying on autism I've been doing, and what the testing he had done last spring showed in less articulate terms. Ms. R said it's called Little Professor Syndrome. Many autistic kids sound like they know just what they're talking about. They can echo back mounds of information and seem to be very with it. But, they don't understand. They don't really get things, their echoing is just that - parroting. Not showing a true understanding.

Besides that, they have an extremely hard time understanding social situations and even their own bodies. Their bodies are constantly changing, trying to process a bombarding world. The rest of us can filter out what we don't need but they can't. All that together and the world is a very confusing, frustrating place for our autistic ones.

All this led up to her saying that she felt kids shouldn't be punished for their behavior when it's not truly in their control. With Little Man, his behaviors are saying what his words can't. Normally this wouldn't have even been an issue and she wouldn't have called but since she had to leave she needed me to come pick him up.

Who would have thought that the frequent call I came to expect and dread would give me so much insight into my child? Once again I have such confirmation and confidence in his school placement. Instead of punishing my little guy for things out of his control, the focus is on helping him learn to recognize when he needs help or doesn't feel well and expressing his needs appropriately. Even in the class that I thought he was going into, and was upset when he wasn't placed in the "higher-functioning" class, he wouldn't have gotten this extra understanding and teaching that he needs. Sometimes things really do work out for the best.

Good News All Around

I got a call today from animal control and the dog that bit Beans is current on his vaccinations. Woohoo! No Rabies shots for Beans! I never thought I'd be worried about Rabies of all things, but you never know what surprise these kids have in store. Now I can cross that off the list. :)

Last night I was very stressed out as I had missed my English class on Tuesday in the run around taking Beans to all his appointments. I knew there was a paper due, printed the assignment instructions from the class website but was still a little confused on what exactly was expected. I spent a few hours last night writing up my essay (just the rough draft was due).

I got to school early today to make sure I had the copies that my professor wanted. I went to my class and spoke with a couple students from my class and found out there was a 300 word in class essay assigned when I was absent. Now mind you, this is not the paper I wrote last night but an additional assignment. Panic mode starts to hit as this teacher has a strict policy on missed in class work.

Thank goodness my professor arrived shortly after. I explained why I had missed class and, not only did he give me time to do my 300 word essay in class, he was impressed that I had completed the rough draft of the other essay as they were starting it today. I thought it was due today. No wonder I was confused on what to do. On top of that he said he has a special connection to students who took time off before coming back to finish as he did the same thing. So I didn't have any penalty for the class I missed, I actually am ahead in my work, and I made a personal connection with the teacher. Very nice. I just love it when things that first appear challenging turn out to be positive.

Dog Bite and Some Happier Events

I'll start with the sad so I can end with the happy. On Monday evening, at Little Man's guitar lesson, Beans was bit in the mouth by a dog. The dog's owner had brought him (a little Shih Tzu named Chin) to try and socialize him. Beans approached and owner insisted he wouldn't bite. Chin let Beans pet him a few times then the last time he bit him right on the mouth. :( Blood was pouring everywhere and Beans was of course a screaming, flailing octopus boy.

He actually got pretty lucky and didn't need any stitches but the dog got him in two places on his bottom lip, one on his top and a good gash on his top gum spanning the entire length. Since the cuts weren't deep the main concern is infection. Since it's in his mouth I can't put his normal mupirocin antibiotic cream on it so the pediatrician put him on a preventative antibiotic. The doctor had to report the bite to animal control who is tracking down the owner (the director of Little Man's music school should know who she is) and verifying the dog has had it's Rabies shot. As long as it's current Beans will be fine, if it has lapsed I'll be hearing from the health department and Beans will have to go through the series of Rabies shots. The owner told me when the dog bit that it had it's shots so I'm just crossing my fingers that they are up to date and we don't have to put Beans through that.

On our way home from the lesson, after the bite, I stopped at the grocery store to get something for Beans' sore mouth. I was so frazzled that I managed to leave my purse sitting in the cart when I loaded the kids back into the car. I didn't realize until 11:00 pm that it was missing so I called the store and by some miracle someone had turned it in! I picked it up the next morning and not a single thing was missing - not even my credit card or the little bit of cash I had! Thank you, thank you honest person. You saved me so much trouble.

Beans crashed in the Car after his rough day

Tuesday morning Beans had an opthalmologist appointment to check on his eyes. They are incredibly sensitive to light and the immunologist was concerned. Everything checked out perfectly! He has perfect vision and no neurological cause to the photophobia. And even better, a simple solution - he'll wear sunglasses. I can handle this one. :)


Things seem to be going along well as far as school is concerned. Beans has gotten 100% on both of his spelling tests - including the 5 challenge words each week! He's soaking the knowledge up like a sponge and loving it. He's so happy to be a "normal kid" as he puts it.

Little Man also seems to be doing well in school. His class is a little different so I don't have any grades or scores but his daily home notes seem to indicate he's doing much better this year than last at least in the behavior and participation areas.

As for me, I am loving school. The adult interaction and soaking up the knowledge myself is almost, as my brother J put it, a drug. I have to get busy tonight and finish my rough draft for an English essay due tomorrow and have another couple big papers coming up. It's a lot of work but it's so rewarding. And the college library - oh boy, I'm in heaven. I have found so many books on autism that should help me help Little Man better. I'm getting set up to implement visual activity schedules for him to try and promote some independent functional behavior. It will take work, but so does everything worthwhile. I'm excited to find new methods that might produce better results. I'll let you know how it goes.