I felt that my daughter's teacher didn't understand what she was dealing with with Alissa. My understanding is that she had not worked with kids with autism before. This is a copy of the letter I sent at the beginning of the school year to try and help her understand. I have removed some personal information and names of the staff, but I wanted to share in case this kind of thing might help someone else communicate with their child's teacher.
Date
Dear Mrs. S,
First, I want to thank you for all the time you've spent so far trying to help Alissa fit into her new class. I know it continues to be a trying situation. I really do feel for you. It's obvious to our family that you care deeply about your students.
I wanted to write to you a little about Alissa. We know she has autism and sensory issues, but I wanted to talk about what that really means in her case. While she is chronologically 5 and looks 5, developmentally she is in the 2-3 year old range. Her language skills are probably in the 2 to 2 ½ year range, though they are getting better.
Here's what Jim Sinclair, a disability rights activist and writer who has autism has to say about it. "Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion and encounter, every aspect of existence. It is not possible to separate the autism from the person – and if it were possible, the person you'd have left would not be the same person you started with."
Part of her disability is that she does not have the executive function skills that a regular child of her age would have. This means she has a terrible time with transitions and with regulating her behavior. I know it can seem like she's being bad on purpose, but sometimes she really can't help herself. She just doesn't have the skills. Of course I want her to have these skills. I want her to have the control of a regular 5 year old, but her disability is in the way of this.
I know sometimes she can get 'stuck' on a specific activity or behavior. This is similar to the experience we've all had when we get a song stuck in our head and can't seem to get past it. When this happens she needs help. She needs to be redirected when she can't seem to make this transition herself.
She is a visual thinker (a trait of autism). This means she needs to see, graphically, what is expected of her. She has done very well in school in the past with a visual schedule. When she has trouble knowing what to do next, her teacher would prompt her to check her schedule. She is calmer when she knows what to expect next, and they found it made transitions easier. A simple visual schedule might be a stiff piece of paper with a line of Velcro on it. Pictures representing the activities she needs to do (at least the next few things) can be put on the Velcro in the order she should expect them. When the activity is done, that picture is removed.
To help her regulate her behavior, her previous classes used a stoplight picture. If she started acting up, she was taken to her stoplight (which was posted on the wall) and shown she was in the yellow zone. If she kept up, she went to red. Her ESY teachers should know the details of how they did this with her. Having a visual reference of what the rules are can also help her. I have made up a picture card showing the activities she is not supposed to do in school. When she starts doing a behavior, she should be directed to the picture and reminded that it's not okay. (Please keep in mind that the showing her the rule and redirecting her into the correct behavior has to happen before she's in 'meltdown' mode. Once she has reached that point, she can't be reasoned with. She just needs to be removed from the situation and given a quiet and safe place to calm down.)
When she is having issues with sensory overload (which I expect is happening while she's in a class with so much more going on than she's used to) we're found that deep pressure can help, sometimes spinning can help, sometimes swinging, and sometimes hanging upside down. An OT with experience with sensory issues can be a great resource. I know that her previous school kept a weighted vest in her cubby. She had the option of wearing it in circle, or when she needed to be able to sit and attend to something. In general, the weight needs to be about 10% of the child's body weight (so about 4 lbs in Alissa's case) and should not be worn for more than about 20 minutes at a stretch. If it's left on too continuously, it loses its efficacy. Sometimes at home she will lie down on the floor and I will apply deep pressure with a yoga ball – slowly rolling it up and down her legs and trunk while applying firm pressure. She can sometimes tell me when she wants to be 'squished' and will tell me when she's had enough.
I would be more than happy to come in and brainstorm ideas to help Alissa function more appropriately in school, both with you and with the paras that will be working with her. This is a new experience for her and she needs help learning how to become part of her new class.
I hope this information can be of help, and I hope I can be a resource in helping her learn to be a better Kindergartener.
Sincerely,
Noelle M.
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Comments: 20
I am reading a get ready for middle school book for NT kids and then want him to read it as well. I got some good tips in the MAAP newsletter I got yesterday in the mail on tips for kids in the tween and pre-teen stages.
Keep us posted on the response!
I don't think this teacher was malicious; just utterly clueless and unwilling to admit that her way of doing things might not work for everyone.
At Matthew's three year IEP a year ago the AAC person suggested getting all the therapists, teacher and aide to make a book with their tips so that when he goes to a new school there is something to give them to look at for insights into the student.
Since this is his third year there I should start compiling data but looks like he would also do fifth grade there and then go on elsewhere.
Laura
PDD-NOS is a diagnosis from the DSM IV as I understand. That was Alissa's initial diagnosis when she was younger and first diagnosed. As she got older and I read more, I had her evaluated again. This time she did get the full autism diagnosis. I think aba can be very good when done correctly. We have a private therapist that uses a combination of aba and floortime and Alissa does well with her. I like the idea of intense intervention through the school, especially as early as your son is getting it, but you need to make sure they're working on the social component too. Alissa likes to be around other kids and will imitate (when she's really interested) what they're doing. If she only saw unusual behaviors, I think that's what she would imitate. It's good for her to be around her 'typical' peers and have a chance to imitate them, and it's good for them to be around her and learn to treat someone 'not-typical' as a peer.
Her Kindergarten year was pretty bad. The general ed teacher was not on-board with what Alissa needed and some of her team was fairly inexperienced. This year we have a really good team that listens and trys to integrate what I tell them about her needs. She's well accepted in her class and some of her regular ed peers will choose to join her at lunch. Done right and with a good team, you can have success in a mainstream school.
I stay on top of things, I document everything. I carry a notebook (3 1/2" binder) to every meeting. I put Alissa's pictures on the cover and have organized all of her evaluations, a timeline I keep of when she's hit different milestones, all communications with the school (I write down meetings and phone calls and print emails), her behavior plan, report card results, and notes on her home therapy. They know I'm well-read and organized and I think it helps when it comes to discussing things. They take my input seriously.
My advice is to educate yourself as much as possible. Read about PDD-NOS. Decide for yourself where your son sits on the spectrum. There are comparision charts that will show PDD-NOS traits vs. Autism. Have a look at it and see where your son fits. Know your sons educational rights. I recommend www.wrightslaw.org. They are an awesome resource. You might look into getting an educational advocate to attend school meetings with you. The advocates are no-charge here in Colorado. They will know what a school does and doesn't have to provide for your child.
I would say one thing that helped me the most though, is mind-set. My mind-set. Not everything she does is because of autism or sensory issues. Other kids do weird stuff too. Sometimes she's just being a kid. I try to 'let her be a kid' as much as possible, and then make the adjustments I need to for the autism.
I'm sorry this was so long-winded. I hope it helps.
Your expectations are well within reason. I liked your approach because it give the teacher a chance to consider what has worked before with Alissa. Too many times, parents just figure that the school will deal with it and of course we do. Having an involved parent is good for Alissa as well as the school. Thank you for a fine letter.
thank you so much.not long at all beleive me i need all the help i can get and all the info i can get! WOW im shocked that CO doesnt offer This unless you pay for it. im baffled.. In ny its free from birth to 3 they go through the early intervention program when they hit 3 years of age it goes through the school district and its 100% free. There are some parents that can afford to have extras like they have private therapys but its all from the same agency. My son will be going to school from 11.30-2.30 and then he will also have 2 hrs of ABA a day at home along with OT speech, feeding, PT. i feel really overwelmed sometimes but its for my son so thats what they say get it all now as much as you can but ya know as you said someitmes there just being a kid. how much is too much??? when do they have time to just be a regular kid???You know i have my husband on one side saying WOW hes just 2 this is too much and then i have the dr's saying get it now i feel torn..There are very little support groups in ny and with all of this who has time to go to any of them. I understand what you mean when you said that being around kids that are not on the spectrum allows them to learn good behavior. The shcool that my son is going to now has that also they have 2 classrooms in the pre k that are mixed and what they do is they have waivers its for parents that can not afford to send there kids to pre k full day they have waivers and thats how they get the classrooms to be mixed. i think thats great. i think your daughters so lucky to have you fighting for her every step of the way. THATS AWSOME!!!!!! i cant belive that there are states that do not offer this with autism on the RISE as it is. I looked at one study that said 199 kids out of 900 now thats alot.. thats huge. I still find my self lost. I think that my biggest challenge was understanding everything like his thearapist would say he loves deap presure and im like ok whats that i didnt know anything and sometimes i think they expect you to know it and i dont and of course now im better but theres still things where im like huh. does anyone have any sugestions on some easy reading material that is easy enough for parents to understand???? I think your doing an great job noelle.. thanks for all the help
LAURA
I'm curious as to how your son is doing now that he's further into the school year.