The Nathan Handbook

Okay, I've been busy. I put together a "Nathan Handbook," to give his new teacher.

I got one of those 3 ring binders, a "view binder," which has a clear plastic window on the front where you can slip in a cover sheet (or in this case, a photograph). I put an 8 x 10 picture of Nathan on the cover, and put his name down the spline.

Inside, I put a letter to the teacher, telling her that I created this book to help her with working with my son. It has some personal info in the binder, because the more you know about Nathan, the easier it is to work with him. It has some things that we do to prevent meltdowns. It also has suggestions from autism sites for how to teach autistic kids.

I started with "6 Things a Teacher Should Know About Nathan." This is a quick list, stating things like how he has sensory issues, and has trouble with transitions. It also says we want to keep the lines of communication open.

Then I had a "Student Profile." This tells a lot of personal info about Nathan. Some good things about him, his strengths, his successes, our hopes for him, his weaknesses, etc. I'm sure the whole school is aware of Nathan's aggression; I wanted her to know some good stuff, too. And knowing, for example, that Nathan loves certain cartoon characters, could help them reach him when he gets uncommunicative, or if they want to get on his good side.

I included a whole chapter on "Avoiding Meltdowns." This is anything I know that sets off a meltdown, and anything I know of that helps to diffuse it or avoid a bad situation. At the end of this chapter, I included the behavior chart Nathan and I created for his iep. This shows what he looks like as he goes through the steps of getting aggitated, right up to full blown meltdown. It also lists what he might be feeling at each stage, and steps that can be taken to help de-escalate the situation. Hopefully, she already has this, but best to err on the side of caution, right? It wouldn't be the first time the school neglected to give information to his teacher.

I figure the information provided up to this point takes about 7 pages, in large print. Easy to read, and she can gain a ton of info in a short amount of time. Then I also added in printouts from the internet, such as Ten Things Your Student With Autism Wishes You Knew and Ten Things Every Kid With Autism Wishes You Knew. Perhaps a bit repetative, but hey, it's good info. I also printed out various articles from the net regarding teaching guidelines and suggestions for students with Asperger's or autism. Most were from the OASIS site. If she wants to read more in depth info, it's there in the back of the book.

For good measure, I tucked a couple of my business cards in there from the NW IL Autism Support Group, which has the website address, my email address, contact info for the group, and even this blog. (Nobody from the school has bothered to check any of it out yet, but ya never know).

Finally, I tucked the book Can I Tell You About Asperger's Syndrome? into the pocket of the ring binder. I love that book. It's easy to read, appropriate for Nathan's age group, adults can read it and get an overview of what it's like to live with Asperger's Syndrome, and it isn't full of medical jargon. I give this book to anybody who works with Nathan - especially the busy adults who don't have the time (or the interest?) to read anything else.

So now I have my handy dandy little Nathan Handbook. I hope his teacher and para will read it, or at least the first seven pages. Wouldn't it be amazing if we could prevent the majority of the meltdowns?

One can hope...

Nerves

I'm so nervous about school starting. The closer the date, the more twisted in knots my stomach gets. There are so many new things this year: new principal, new teacher, new para, new bus driver, new iep. That's a lot of unknowns.

On a positive note, that's also a lot of possible improvements, right? At least, that's what I keep telling myself.

Nathan, bless his heart, looks forward to the new year. He just forgives and forgets everything, and looks at each day like it's a new start. (I wish I could do that sometimes).

He doesn't think about the bruises he came home with, or the restraint they inflicted upon him. He doesn't think about the 40 hours of homework every week during 3rd quarter. He doesn't think about his (former) principal getting in his face and yelling that "he just behaves like this to get attention." He doesn't think about five adults pinning him to the floor; or carrying him down the hall spread eagle, his fanny dangling above the floor; or the four adults that pinned him to a chair and yelled at him.

But I don't forget. And I don't forgive, either. I'm just not capable of that at this point. And I just want to cry that I have to send him back to that place.

Dh reminds me that the principal is gone, it's a new teacher that actually WANTS to teach him, and a different para that will now be full time. All true. All potentially good.

(Too bad the worst of the "team" will be returning.) Even with all that good, I still feel like my stomach is in an ever-tightening knot. I warned dh that I will fight back this time. That I will not allow them to continue as they have. They already think I'm a mother from hell. (They have no idea.)

Restraint, which they said is going to be used whether I give permission or not, to preserve the safety of other children, is only to be used as a last resort, and that it is only to be administered by trained personnel, and that they must be aware that using restraint is absolutely guaranteed to escalate the situation ten-fold. Using restraint will guarantee meltdowns. Period. I informed them that Nathan can't handle being touched when he escalates, that it is painful to him. We do not condone its use. Efforts to de-escalate are absolutely necessary.

So to that end, Nathan and I worked together on a behavior chart to help the teacher or para discover what his mounting frustration looks like (taking off his glasses, throwing papers on the floor, his expression and his manner of standing, etc.), and possible ways to help diffuse the situation before it escalates to aggressive behavior. Nathan likes the chart, and is willing to use it. Of course, that's easier in theory than in practice, but if the para and the teacher use it, well, this really could work. Potentially. The mere fact that Nathan is willing is a good step in the right direction.

I'm actually thrilled that there is a new principal, new teacher and a new para. This is BIG. I was shocked when I found out there was a new principal. I was afraid to believe it. I was really happy to meet her for myself. First impression was very good. Intelligent. Sadly, the meeting was brief. But, this woman has no history of abusing my son, so she's got that going for her.

Nathan's new teacher is my biggest hope. She has a friend with an autistic child, so she is "looking forward to teaching Nathan." That's a huge step up from the teacher who was scared to death of him. At least she is starting out on a positive foot.

I don't know anything about Nathan's new para yet. Zippo. His last para was a very sweet older lady, with a lot of patience. A grandmotherly type. However, she was somewhat ineffectual. Part of the problem was that she was with him for such a short time - not her fault. But the other problem was that while she was with him, she didn't really seem to watch him that closely. After all, she never caught any of his signals that he was getting overwhelmed, so there was never any attempt at de-escalation, at least not until it was too late. And Nathan was able to take off out of the classroom without her even being aware of it! She could look at a situation after the fact, and have a pretty good idea of what happened and why (which is more than I could say for the teacher or case manager), but she couldn't seem to do anything about it as it was happening. I can't really blame her. She knew absolutely nothing about autism before working with my son. Nothing at all. I blame the school system for not training her properly (or at all). I really pushed in the last iep meetings that they get him a para that either knows something about autism, or TRAIN THEM. We'll see. I hear there was to be a district-wide training of all teaching staff. That's excellent news.

So the teacher is supposed to get training, too. And the Autism Team will be working closely with her, from the way it sounds. I'm not certain of all that the Autism Team does, or how they do it, except that they observe from time to time and make recommendations. Their recommendations have always been quite good. Last I heard, they will check on Nathan early in the semester, and they will help us to give an introductory kind of seminar to the class about how Nathan has autism, and what that means, and how the class can help. I've always thought that would be a good idea. And later in the fall, the rep I worked with from the Autism Team will be coming back from maternity leave. I really liked her, and feel that she really wants to help Nathan succeed. I look forward to her return.

Okay, I'm talking myself into feeling a little better here. The knots are loosening somewhat. The next couple weeks at least should be fairly calm - the honeymoon period. Maybe it will give me reason to be more optimistic.

Keeping my fingers crossed.

Happy Anniversary

Donnie and I are celebrating our wedding anniversary! The picture is our "wedding picture." It's not really from our wedding, because we eloped. But this was the first formal picture we had taken, right after we got married. We've been married for 14 years, though we have been together for about 21 years.

I'm a firm believer in love at first sight!

We went out to dinner, and brought Nathan with us. Nathan made us a card while at Grandma & Grandpa's. It was cute!

Hey Donnie? On a hot summer's night, would you offer your throat to the wolf with the red rose?

Wonder

I stumbled across the lyrics to a Natalie Merchant song that just strikes a chord with me. I thought you might relate to it as well.

Wonder
By Natalie Merchant

Doctors have come
From distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
Newspapers ask
Intimate questions
Want confessions
They reach into my head
To steal the glory
Of my story
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
I believe
Fate smiled and destiny
Laughed as she came to my cradle
"Know this child will be able"
Laughed as my body she lifted
"Know this child will be gifted
With love, with patience
And with faith
She'll make her way"
People see me
I'm a challenge
To your balance
I'm over your heads
How I confound you
And astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation
I believe
Fate smiled and destiny
Laughed as she came to my cradle
"Know this child will be able"
Laughed as she came to my mother
"Know this child will not suffer"
Laughed as my body she lifted
"Know this child will be gifted
With love, with patience
And with faith
She'll make her way"

My Mystery Man

I was amused to hear that some members of the Northwest Illinois Autism Support Group didn't know if I was married or not, because they had never seen Donnie. I've finally included a photo album called "Family," which includes pictures of the three of us. There's also some pictures of my siblings, which will explain why my screen name is twin3rd. (My twin and I were the third set of twins in my immediate family).

Say cheese, Donnie!

2nd Request

8-2-07

2nd request

We need this back before school starts.

Thanks!


The above note was stuck to another request for me to sign a "Therapy Department Release Of/Request For Information," which again includes the phrase "and to obtain medical referrals for therapy, records, reports and verbal information..."

Yet again, and open release of any and all medical information the school wants.

I register him on Tuesday. I wonder how it will go over to receive a script for therapy and evaluation, and no signed release form...?

On an interesting note, I was searching the school's website for the correct address, and discovered that they listed a different principal. Hm. Time will tell if this is a good thing, or a bad thing. I have seen a principal make a huge impact on how Nathan is treated, and not in a good way. Could it be that we get a principal that perhaps dissapproves of restraint...? Of suspension for actions related to one's disability...? Or could we again be faced with a principal who thinks we should take our son home and "beat the living hell out of him"...?

Think positively, Joni. Think positively.

The Flood Waters Are Rising

It has been flooding here in Rockford. Our town has been declared a national disaster area.

My husband called me about 5:30-6:00 this morning, and informed me that the Army Corp of Engineers was at the Alpine dam. This was not good. There was a major flood here a year ago, and the dam was feared to be unable to withstand the additional pressure. Now it appears to be happening again.

By 6am, I had walked to the corner and peeked in the direction of the park, which I discovered was completely submerged. The flood waters were now just around the corner from my house.

I turned on the tv to hear what was happening in town. Sadly, I watched pictures of my closest Logli, it's parking lot under three feet of water. They announced Charles Street and Broadway were closed. Then they announced 11th Street, the street my company is on, was closed (but not that far south). How was I going to get to work? I figured I would have to take the long way around. Then I started hearing road closures at Sandy Hollow and South Alpine. At this point I'm thinking of Mulford as a possible route to work.

At 6:30 or so, I left a message at work, explaining that the roads were shutting down in my area, but I would still try to get there as best I could.

I called my mother-in-law, who was going to watch my son for the day. As I was talking to her, I overheard the tv announce that Chelsea and Guilford were closed due to a sink hole. That was on my way to her house. They also announced State and Alpine was closed! Holy cow, for that intersection to be closed, this had to be bad. I planned to be on the road by 7am, giving me an hour to make a normally 15 minute drive.

Getting to MIL's house was interesting. The traffic was being diverted away from Alpine, right down Rural, which I needed to take, only in the opposite direction. I had no one on my side of the street, and breezed along easily. However, the opposite lane was bumper to bumper pretty much from Fairview to Alpine.

MIL was getting water in the basement, but nothing major, just a little. They were higher than the nearby dam, so they were safe if that overflowed.

I headed for work, deciding to head straight east instead of south. I drove along the edge of Mauh-nah-tee0see golf course, unsure if the water was going to lap over the edge of the road in some places. The little foot bridge near the road looked like it was floating in the middle of a pond. I got to Mulford, heading south, and cruised along nicely. I saw traffic lights out at Newburg, but it all moved well. Then I saw a police car on the side of the road, and quickly scanned to see why. That's when I saw the railroad tracks. The earth had been washed away under the tracks, leaving the rails suspended over thin air. Yikes! I turned west, to swing back toward work. The road was submerged, but not by much. I saw a bunch of cars risk the soggy roadway successfully, so I chanced it. I had no intention of going that way on my return trip however.

As I drove the rest of the way to work, I heard that State and Fairview was now under water! It had been fine just a few minutes ago! Then they announced the closing of State Street, at Fairview, Alpine and Trainer Roads! That was not good at all. By the time I got to work, I was not at all sure I could get home again.

At work, I checked a website for a local tv station. It listed an evacuation of my neighborhood! I phoned a neighbor, who knew nothing about it, but she informed me the police were driving down our street, and parked at the end of it. Oh no!

That's when I thought about my dog.

I told my boss that my street was being evacuated, and she told me I might as well stay, because they'll never let me in. I insisted I had to go home, to try to rescue my puppy, trapped in his kennel. She let me go. The general manager stopped me on my way out the door, and told me to call if I needed any help. What a nice guy!

I managed to weave my way home, avoiding all the closed roads. I immediately started packing up computers, and gathering any personal items I wanted to rescue. My husband joined me, and dismantled the kennel so we could take the dog to my MIL's.

The police did come (loudly!) banging on our door. They insisted we leave as soon as possible and get to higher ground. They were getting reports that Alpine Dam was going to burst, it was just a matter of time. All that water would follow the path of Keith Creek, putting our house right in the danger zone. So much for the "voluntary" evacuation we heard about on the radio. The police were rather insistant. "Leave now!"

It was wild driving away from the house. The streets looked like a mass evacuation. Everyone was slowly making their way to higher ground. Very eerie!

Police were everywhere, directing traffic, and trying to get as many people out of the path of the dam as they could. My husband and I braced ourselves for the idea that our house could be slammed with a title wave of water.

We were both driving, Dh following me, until we spotted a street that we often used as a shortcut. No one appeared to be using it! We both cut out of the traffic and zipped up the street. We got to MIL's house in record time, avoiding all the horrible traffic.

At MIL's, we heard the news. The dam was near breaking point. They said the water was near the spill-over stage. At that point, the dam would become unstable, and they expected it to rupture. But they decided to do a slow release of the water instead. This lowered the water level in the dam by 1-1/2 feet in a half hour. That aleviated the stress on the unstable dam, and averted the crisis.

Quickly, the roads began to open up again. I headed back to work. All our belongings were kept at the ready, in case we need to grab them again.

More rain is expected tonight.

The Flood

Flooding Again

Familiar Face

It was so cool to go to the Family Night at camp, and see a familiar face! Another member of the Northwest Illinois Autism Support Group was there too!

She asked me if I was happy with the camp. I told her about Nathan getting hit, kicked, punched, right in front of counselors, and about his finally getting fed up and walking out. I also told her exactly where he was when they finally found him (nearly to the major highway). She was just as appalled as I was. She asked if he had an aide, and I told her yes.

She confessed that her son had also had problems at camp, with a bunch of kids giving the finger (also in the presence of the counselors), and being all around unfriendly. He was not happy with the camp at all. After four days, she's pulling him out of the camp.

She told me about a daycare that she uses, which is also affiliated with the same group, but they do a much better job with the kids. I've tried to get into it, but they are full.

I've wanted to complain to the people who run the camp, but Dh won't let me. He doesn't want me to ruffle feathers, because we don't have that many options in this town for daycare. I don't want to keep using this place! But what choice do I have? I can't just leave him with some untrained teenager. I don't have family in the area that I can use on a regular basis for childcare. And we've gone through just about every daycare in town.

Many members of NIASG are hoping that the new autism school will have a decent daycare/afterschool care program associated with it. I know the groups they are planning on using for their childcare are the Y and the same group that runs the camp. I'm not happy about either one. If they can't handle my son, how are they going to work with kids that are more profoundly affected???

I guess there just aren't that many moms who have to work. Or maybe they have family they can leave their kids with.