Showing posts with label special ed preschool. Show all posts
Showing posts with label special ed preschool. Show all posts

2 More Days


Just two more days of Pre-school Summer School left. Then I will have two kids home all day to bring chaos to my mornings. The good news is Jimmy sleeps in until 11:00. The Doodle is going to miss his routine and I hope he doesn't get too out of sync about it.

At home, we don't have a lot of routine--it's more free play, destroy time and mind games for control while OCDing. Lately his OCD focus has been on Cool Ranch Doritos and Salsa. We put a lock on the pantry and tie the refrigerator closed with a highly technical security lock that resembles a purple satin ribbon. Too bad he couldn't be compulsive about fruit or drinking water; something a little healthier for him.

One thing I can be sure of, there will be plenty of time for TIME OUTS.

School starts again on August 16th. He'll be going to a new school, new class, with a new teacher, new bus driver, new bus, new Shape Aid and new hours. That's a lot of new for a child with severe transition issues. With fingers crossed, I will hope for the best.

See No Evil, Speak No Evil, Hear No Evil


Splitting hairs...And I'm not just talking about the Doodle's new botched up haircut I gave him. No, I am speaking of the Doodle's second Progress Report for his special ed day class. I've got some issues. Again.

No surprise that something such as this would set me off. I actually got into a very heated discussion with the Doodle's teacher at a home visit in November...when I received his first progress report.

So in special ed, you write goals very specific to each child's development. Since this is my first experience with IEP's and special ed and medically fragile and autism and epilepsy, I'm pretty new to this. I'm taking it one day at a time mostly and trying my best to understand how this whole thing works.

I was pretty disappointed with the goals that the Doodle's teacher scratched out for him. I thought they were very general, nonspecific to his needs and frankly, thoughtless and lazy. For example, I found out after our first home visit that the Doodle had one speech goal for the year broken into three goals for the year. Two short term goals=to communicate five new words with 4/5 accuracy by Oct 30 2009and March 30 2010 and one long term goal by August 2010 which would be the combination of the two short term goals = 10 New Words.

So this teacher who does not specialize in autism since the Doodle is in the medically fragile class and is the only autistic child in there, writes these willy-nilly goals and then has the nerve to sit in my living room and tell me that he hit his short term goal because they thought he said Help one day back in October. Once. Never again. Never repeated. So we proceeded to go around and around about how very generic his speech goals were and how just because she thought he might have said word once, it surely wasn't with 4/5 accuracy which means the short term goal was definitely NOT MET. I told her that I didn't understand how he went from having 6 specific speech goals in July to having just one in August when the new school year started with her? I asked her if she ever even read his original In-Shape goals? She hadn't. And what was even more irritating that the Doodle's previous speech therapist just happened to be the speech therapist that works in the Doodle's medically fragile classroom...hmmmmm. Did she have zero input in writing the speech goals for a kid she just worked with for almost a year? What about making animal noises? Or blowing? Or sucking? Or taking turns and listening? Before those were all on his "speech goals" and were things he worked on with his speech therapist.

So I was mad. And disappointed. And irritated. This is the same teacher that "forgot" after 3 reminders that the Doodle was entitled to some Physical Therapy and a Physical Therapy evaluation and it took a call to the Principal to get that going 90 days later...I told her she would have to excuse my level of trust in her capabilities...So we argued and went around and around and the teacher felt like I was attacking her. Which I kind of was, because I asked her, well if I have questions or want to change a goal who the heck would I turn to? I thought it seemed pretty likely and obvious that I would bring my concerns to her since, after all, she was his TEACHER. Needless to say, that meeting didn't go well.

To make a long story even longer, I just received the Doodle's next progress report and I about crapped my pants. I turn to the speech section to look at his whopping one generic speech goal and I am reading about his progress and in it, his teacher has the audacity to list out all of the Doodle's signs as if they were "NEW"...no they were not new. He has one new sign for Thank You. All of the other signs he has had for over a year...and she knew that. Did she think she was tricking me? Or was she just checking to see if I'm paying attention? When the Doodle started school in August, I listed all of the signs that he does at the IEP meeting, she wrote them down. His speech therapist also knows they are "OLD" signs. So WTF? I get that "New" words falls into a broad variety of communicating: words, signs, pecs, etc. Regardless, she listed an old list and then stated "SHORT TERM GOAL MET".

If he's not meeting his speech goal what happens to her? Does she get taken out back and receive 10 lashings? Does she get a cut in pay? Does it go on her record? Hell no. So why not be honest and write down the truth? Obviously I know my son is not talking or learning any new signs. Do I hold her responsible? NO. Absolutely not, no one can force or make the Doodle talk. He will talk when he is ready and that may be never and that's hard. But what I do not need is a lazy teacher trying to convince me that my son is meeting his speech goal when in fact he's not. It's hard enough fighting the autism fight at home, I live it every day. I shouldn't have to now fight with the teacher about it. Just because she wrote down that he said egg once and good morning once does not meet his goal.

So now we are having another home visit.

At the last home visit that turned into a big argument, she made a comment that maybe she shouldn't come back for another home visit because of the way it turned out. I agreed with her and told her not to plan on it unless she brought a Mediator with her. And so this next meeting we have she is bringing the Supervisor and the Speech Therapist. It ought to be a good one because I will not sit and say nothing. I will, again, speak my mind because I can and I should. And the Doodle cannot speak and it is my job as his mom and his advocate to be his voice. And if I get stuck with the lable of being a bitch or a pushy, demanding mom so be it. Don't put into writing and try to convince me that my son is meeting a goal when I know and everyone else knows is completely not true. I'm sorry but ONE speech goal and 20 minutes a week of GROUP speech therapy for a completely nonverbal child is not acceptable.

Rocking the Boat


Summer school is right around the corner, and with summer school comes new decisions that need to be made which means another IEP (Individual Education Plan) for the Doodle.

At the last impromptu IEP they called in January, the one where they tried to get rid of our nurse, it was decided that we could keep our nurse through May 28th which is the end of the school year. This was agreed to based on the advice from our Doctor at UCSF in the form of a letter.

And now, we have an upcoming appointment with UCSF so I'm anxious to see what the Doctor says about this now. The last letter I have from the Doctor is that at the very minimum he should have a nurse through the end of the year and beyond. I know I'm going to have to bite the bullet and have the Doodle suffer through an agonizing 3 night video eeg with the toxic eeg glue...

So I received a phone call today from the Doodle's Shape Supervisor to ask me where I would like him to go to summer school?

Hmmmmm. Do I want to keep in the class he's in right now, the medically fragile class, and then move him into a regular special day class (for children on the spectrum, but they don't call it an autism class for some weird political reasons even though it most certainly and technically IS too). And then, if he does move to another class is that the class I would want him to be in next school year.

My thinking is if he's not going to get to have the nurse he loves as his one on one, I may as well move him into the special class he is going to be in next school year with a new Shape Assistant one on one. If I kept him in his comfort zone in the medically fragile class he's going to be used to having Nurse LuLu there and be looking for her and expecting her. And in that environment, I don't know that he'd give someone new a chance. He might just make the new person miserable. Or am I giving him too much credit? Will he even remember the nurse? The new Shape Assistant one on one he gets assigned is going to have some pretty big shoes to fill. It's not easy making a connection with an autistic child and this new person will be starting off from scratch...from riding the bus to understanding the seizure activity and everything else this little guy is packing in his bag of issues.

I've decided, if we lose our nurse, I will go ahead and move him to one of the other classes. Seems silly to keep him in a medically fragile classroom if they take his nurse from him which is supposed to mean he's no longer medically fragile right? But he still is. It only takes one breakthrough seizure or change in medicine to set him back and then we'd be starting all over, scrambling for another nurse.

Deciding which class is going to be hard because one of the choices is at his same school but just the class room next door that uses the same play ground. One of his Shape Assistants, Rachel, is in that class so he will have a familiar face. The other choice is at a different school altogether but is more communication and PECS driven. There he also has one of his Shape Aids, Betsy, so he'd have a familiar face there too.

As usual, I'm over-thinking things and losing sleep because of it. The Doodle doesn't do too well with change and transition and things are going so smoothly right now, I hate to rock the boat. Or, am I capsizing it?

Betsy's Back!

Today we got our favorite and beloved Shape Assistant back, Betsy! We've been without her for about 5 months. She was the Doodle's Autism specialist for almost a year and formed a great relationship with him. He's comfortable with her and so am I. I've mentioned this before but sometimes it's hard having strangers in your house every day, even when the intention is for the greater good. Betsy fits right in and feels like part of our family; not any kind of intrusion. I love that I can be myself when she's here.

So she has big plans for the Doodle. She's going to be working hard on getting him to communicate with pictures. Maybe that will help with some of his bad behavior that's based on his frustration for not being able to communicate effectively.

The Doodle has speech and OT through his special ed classroom, although pretty limited. I thinks it's just 20 minutes each a week. But honestly, that's better than nothing. He finally will be evaluated for Physical Therapy tomorrow at school. It was in his IEPthat he should receive a PT evaluation back in August. Never happened. Finally, at a meeting with his teach the first week of October, I reminded her. She claimed she didn't know about it. But how is that possible I said--you signed the IEP, you were in at the IEP meeting. So, I busted out the IEP and made her a copy while she was at my house. She was going to get right on it. Flash forward to Friday. Still no PT evaluation, which means not Physical Therapy at all.


Did I call the Teacher? You know I did.

To make a long story short. She forgot. She said she forgot because of the Doodle's bad behavior because her focus has been on his behavior instead of his physical therapy. I called Bull Shit on that one. I told her to take some responsibility for dropping the ball and to stop blaming it on the autistic child. No one knows how bad his behavior has been like I do. I can barely stand it. But it's only been a couple of weeks of bad...bad. He wasn't behaving like this back in August, the first time the ball got dropped. And he wasn't behaving like this the first week of October either, the second time the ball got dropped. We had some words. Mostly my words. I told her obviously the Doodle wasn't a priority in her "medically fragile" class room and that what I had worried about seemed to be a reality, that he wasn't fitting in there because of his autism and behavior.

I was guaranteed and confirmed it with the Principal that he would get the PT evaluation he was entitled to. I haven't decided if I should push for 2 1/2 months of back PT for him or not. I hate being "that mother". But. And I have a big butt, I will be that bitch of a mom and continue to fight for that little guy, because he can't and if I don't, who will?

Fitting In


The Doodle Bug is a unique little individual and it's always been my concern that he wouldn't fit in being the only Autistic child in the medically fragile classroom at his special ed preschool. I always wanted him to get the SHAPE program support and participate in the more autistic based classroom with other equally autistic children.


Currently the classroom he's in caters to more medically challenged children and I've said it before the Doodle is only medically fragile when he is actually having a seizure. And, we're going on being seizure free now for almost five weeks! Yahoo!


So now they are talking about possibly moving him into the more "autistic" classroom and doing away with his fabulous nurse. I'm not sure how long they are going to wait to determine this but one of the scary and bad things about epilepsy is that one day it might be controlled and then the next it might be back--full force. You just never know. It's a crap shoot.


So I'm hoping they are going to wait at least six months before they go and decide to pull our nurse and stick him in the other classroom. I would hate to lose our nurse. And she's arranged her college schedule so that she can be with the Doodle in the am at school.
The feedback I've received from our nurse, who attends school with him every day is that the "other" classroom is much crazier and chaotic! With ten autistic kids running around with varying degrees of behavior and developmental issues--it's a very loud distracting learning environment where the Doodle gets overstimulated and a little nuts. Over in the Doodle's medically fragile class, it's calm and quiet and nurturing. Because of the severity of some of the other children in wheelchairs being tube-fed and unable to interact or communicate much, it allows for much more concentration and educational support for the Doodle. The aids in the classroom all think he's cute and great and he loves them too. What I'm saying is that the medically fragile classroom has been a blessing in disguise.


So now I am torn, again, about where I think the Doodle will be best served. I guess I will wait for the school to make the first move and try to release his nurse and then I will demand another IEP. And we'll have to go from there.

1st Day of Preschool

Today was the day we've been anxiously waiting for. The Doodle Bug started Special Ed Preschool today and as proud as I was to watch him go, my heart was breaking a little bit.

It was bitter sweet and I thought the 3 hours would go by a little faster than they did. It was a little bit like watching paint peel. My only comfort is knowing that this is the best thing for him and I feel so much better that he has our trusted nurse, Lou Lou with him. He adores her and I am counting on her to love him while he is there.

I drove him today since the short bus still needs to be scheduled. I walked him to class, stayed for a bit and then inconspicuously left. Lou Lou said he did great! He was a little protective of his pink toy baby stroller that he insisted on bringing...I don't think we'll bring it again. And the best news for the whole day is that he has had ZERO seizures today. So far, so good.

He came home from school and was completely ready for his nap. He's not used to so much activity and excitement. Usually the Doodle is captive in our bedroom stuck on the carpet. I'm hoping this school will be fantastic for his development, social and communicative skills. He shows such potential if we can just get the seizures under control.

I'm so proud of this little man and I'm pretty proud of myself for not crying too much today; or at least in public. I can't wait to scrapbook these pictures!