Today we had Sam's ARD meeting. I have to say it went SO much better than expected. I came in with three typed pages of revisions to Sam's IEP , with a stapled copy for each person in attendance which included a picture at the very front of our sweet boy. I had my tape recorder ready and Carley from BWF with us for back-up. I haven't been this prepared since I gave birth, ha! Now I know why God made me so anal-retentive about things for all of these years. For Sam.
Everyone there was very receptive, respectful and kind. They could not promise that the only teaching method used would be applied behavior analysis with discrete trial training (which was the first thing I requested), but they did give us a list of all of the methodologies that they did use..which happened to all be ABA methods...hmm? I won't go over each revision that I requested, but I have attached a copy so that you can get a general idea of what I did. I am not going to post Sam's assessment from his school or his ARD paperwork from the school but if you have any specific questions about that, e-mail me and I would be happy to share and to help you in any way that I can.
We reached the end of Sam's ARD meeting with the decision that all of the goals discussed would be on the table still starting next fall and that additional revisions ( pending a new assessment at the start of the next school year) would be added to his final IEP prior to us signing. In my previous post I discussed how we did not feel that the school had been teaching Sam properly. This being so, we decided to pull him out of the PPCD program for the last month of the school year and start him in a smaller class with a new teacher in the fall so that Sam would have more one to one time. Also, after some major consideration between my husband and I and discussion with Tracy & Carley at BWF, we decided that Sam was not ready for group instruction. We also increased Sam's days at BWF from 3 days per week to 5 days per week.
If you are approaching the ARD process with your child I hope that my information can in some way help you. First and foremost know that you are an equal part of the ARD meeting for your child. You DO NOT have to sign your child's IEP if you do not agree with it or understand it. The school does not have to say yes to what you are asking for, but you have the right to ask and to be heard. Get a book or two on the ARD/IEP process, I would suggest
(Wrightslaw: All About IEPs ISBN: 978-1-892320-20-9) by Pete Wright, Pam Wright, and Sue O'Connor ), read about the ARD process on this website: http://wrightslaw.com/ , read the IDEA, in fact study it. Scour over each page of information that you receive from your child's school pertaining to their ARD meeting. Show-up with a smile on your face and politely wage war with the school if you need to. Don't go in the meeting with hostility, your child may have an amazing and receptive school staff, but get that artillery ready if you need it. It is your job as your child's parent to fight for them. I know that it shouldn't be so HARD for parents of children with autism...but it is. As my Mom would say, we've just got to "suck it-up!" ha! You will feel overwhelmed but one look at your child will make it all worth while. Good luck.
My revisions:
IEP Revisions, Additional Goals & comments For Sam
1. All Teaching & Instruction for Sam by his Teacher/Aides/Therapists use Applied Behavior Analysis with Discrete Trial Training Methodology. In which his Teacher/Aides/Therapists should be trained by a BCBA that practices ABA with DTT.
2. A 1:1 Aide be provided to Sam for any event outside of the classroom.
3. A Minimum of 80% Mastery on all of Sam’s 36-wk goals except goal #7, which should be 100%.
4. Add Matching goals, Sorting goals and Imitation goals
5. Toilet Training goal, using backward chaining method:
Suggestion: use picture schedule in bathroom for each step for Sam using digital photos of each step as he responds better to photos of “real” things
example:
1. go to bathroom, 2. pull down pants, 3. sit on the potty,
use the potty 5. wipe, 6. stand up, 7.pull up pants 8. flush toilet (wash hands may be added as a separate program)
Full physical prompt through all steps, working backwards to first master “step 8, flush toilet” once each step is mastered at a minimum of 80%, prompting should fade from full physical prompt to partial physical prompt then to independence.
Short Term:
take Sam to the toilet every 30 to 40 minutes using backward chaining, provide book/toy while on toilet
-suggestions for specific short term goals for toileting?
6. Specifically add PECS to goal #9. Goal #1 No verbal prompting.
short term: Full physical prompt with 5 or less prompts, moved to partial physical prompt while using picture schedule
36 week goal, independence, min. 80% mastery.
7. Goal #2 Change visual regard to eye contact goal. Suggestion: state: “Sam”, upon hearing his name Sam should respond by looking up into the teacher’s eyes.
Short term suggestion:
1.) 1-3 seconds with a distractor
2.) 3-5 seconds with a distractor
3.) 5-7 seconds with a distractor
4.) 7-10 seconds with a distractor
Offer verbal praise and tangible reinforcer (parent provided food or highly preferred book or toy)
error correction: hold reinforcer to Sam’s eye level and teacher can fade reinforcer behind their head and sustain eye contact.
8. All speech and occupational therapy services should be provided to Sam 1:1, using direct instruction only from his SLP and OT. at a minimum of 30 min. 1X per week. (1080 min. over 36- weeks for speech therapy and 1080 min. over 36 weeks for Occupational therapy)
9. Add extended year services. It is recommended by Sam’s developmental pediatrician that he receive extended year services and we have seen a regression in skills if his programs are stopped for any duration at his current therapy.
10. Goal #3 Master a min. of 80%
short term:
1.) scribble with crayon, remove “when a crayon is placed in his hand” Sam can independently pick-up a crayon and scribble, so placing it in his hand would be a step backwards for him.
scribbling for 5 or more seconds is a great goal, perhaps add scribbling on a coloring book picture.
add 2.) cutting with scissors, 3.) gluing
11. (side note)That we be notified via phone immediately of any tantrums, attempts to bite, excessive crying or any disruptive behaviors. Sam only exhibits these behaviors when he is extremely distressed (as in his previous speech & OT therapies with ECI ----
and ---- Carrollton because aba with dtt was not being used and Sam was not understanding.) Once we, as Sam’s parents, are made aware of a situation we can offer solutions and work as a team with Sam’s teacher/aides/therapists and be welcomed to observe as well in an effort to help Sam.
12. Goal #4
Must be 5 out of 5 days. allowing Sam 2 days of “non-functional” play will only set him back tremendously and cause regression at school. Toys should always be age appropriate.
short term:
1.) shape sorter
2.) String beads
3.) Mr. Potato head
Change toy every 9 wks, or once toy has been mastered at a minimum of 80%
13. Goal #5
Please list specific tasks in Sam’s IEP
at a mastery min. of 80%
14. No verbal prompting- 36 wk goal: Independent with no prompt, only use visual schedule or PECS.
-change to physical prompting using picture schedule for each step, Mrs. -----suggested using digital photos of Sam doing each step . Short term: 5 or less physical prompts, Full physical prompts faded to partial physical prompt
15. Goal #7 36 wk goal: Independent at 100% mastery with no prompts
Short term: Full physical prompt faded to partial physical prompt
16. (side note included) define appropriate responses.
short term:
1.) not really a functional life skill for Sam, perhaps change this to specifically incorporate a school activity, Mrs. --- suggested when having Sam respond to a bell when it is time to go back inside the classroom. I think that this would also be helpful to have Sam understand that playground time is over and to not get upset when he needs to leave or at least to provide the understanding for him
as this is mastered at 80%, a different task should be chosen for this.
2.) responding to his name should use the eye contact program aforementioned.
3.) List specific routines that Sam will work on in IEP
4.) remove, this only gives Sam a 50/50 chance of choosing
5.) great only use 3 objects or more, never just 2.
Monday, April 18, 2011
Saturday, April 9, 2011
The Fight
We were so optimistic about Sam's school considering that at our temporary ARD they told us that they would be using ABA methods and Discrete Trial Training, which is MANDATORY for Sam to learn. We relayed this to them, showed them proof of a year of therapy, which I like to call "traditional" in which Sam did not meet a single goal. During that year I remember taking Sam to his speech and occupational therapy sessions and watching him cry, struggle, have full-on meltdowns which included sometimes trying to bite. You must understand that this is not my Sam, he has always been exceptionally chilled out and we never had an issue with tantrums..unless we were in his previous therapy. I look back and certainly wish that I could have enrolled Sam in ABA therapy sooner but the reality for us was that we couldn't afford to pay $85-$100 per hour for ABA therapy, yeah you read that right per hour. We aren't just talking about 2 hours a week here, it can be recommended to do up to 40 per week which comes out to $3400-4000 monthly. Our insurance doesn't cover the ABA therapy despite it being a scientifically proven method of therapy for children with autism. So, this is why we applied for grant after grant after grant and finally we found Masonic Children & Family Services and The Brent Woodall Foundation. Thank you God for them both. The Brent Woodall foundation charges the least amount of any ABA location that I have found to date and believe me I have found a lot.
So back on the topic of Sam's new school. We go in for his play based assessment and in the room we have Sam's Speech therapist, Occupational therapist, school psychologist and oddly enough not his teacher. In any case they begin the assessment and Sam is wandering around the room doing his thing, and of course not paying any attention to them. They get him seated and are trying to get him to comply with the assessment, not using one single aba method or discrete trial training method and of course he is not doing anything. So I get the bag of motivators (favorite toys, snacks) that I brought from home and I ask if I can try, so I get down on the floor show him one of his favorite yo gabba gabba books and begin. He immediately starts paying attention and doing the tasks in front of him. The problem with this picture is that I am down on the floor conducting my own child's assessment at his school in a room full of professionals that claimed to use ABA methods and Discrete Trial Training. Not one of them even tried to use those methods for my son. What use is there in taking Sam to a school that refuses to help him in the way that is not only absolutely necessary for him to learn and not only that but it is documented as such.
At the end of the assessment they leave and then come back in with a report of everything for us all to look over. I won't go over everything in detail but two issues in particular stuck-out. They began to discuss with me that Sam did not use his PECS book properly at school. Which is odd because he uses it properly at home and in his ABA therapy program. They proceeded to tell me that he plays with the icons and mouth's them. The problem with this statement is that his teacher and her teaching assistant are supposedly trained in PECS and I provided them in detail what step Sam is on in his PECS program in writing. He is on phase 2 step 1 which very clearly stated that he have access to one icon at a time. And if they had taken literally 1 minute to read the program, or I don't know just listen to me when I explained it to them or actually BE trained in PECS and not just say they were, then that would have been awesome.
My second issue was that they made the statement that Sam did not communicate at all and that it was going to be a goal to help him to do that. Now, it took me a minute to not say something ugly to them.. but I held my tongue for a moment, took a deep breathe and started talking. I told them that Sam absolutely communicates, he does not speak, but he communicates. He requests items with his PECS (which they weren't using properly), he points, he physically pulls your hand to things or pushes you to things. He will come get an adult to help him if he wants something, even if he can get it for himself. He definitely needs help to broaden this and with spoken communication, but he communicates. If they were doing their job as his teachers and therapists and making that extra effort to work with him, then they would have seen that as well. We see it, BWF sees it, my parents see it, my friends and all of my family sees it.
After talking with Tracy at BWF and having some serious discussions of our own, we are most likely going to pull Sam out of preschool and increase his hours of ABA therapy at least until the Fall, and then re-approach it then. We do have an ARD meeting coming up on the 18th and we will discuss our major concerns, and ask that they provide Sam with a BCBA and that they be trained on how to work with him by the BCBA. We are also going to ask that they provide Sam with ABA therapy, after all they provide children with Speech and Occupational therapy when necessary, why not ABA. We fully expect them to say no, but we will ask and we will fight for Sam and the other children with autism that need ABA. One day we won't be stuck in the 60's of autism anymore, it won't be this arduous uphill battle to simply get the therapy that works for your child.
One day parents that receive a diagnosis of autism for their child will get to deal with the battle directly, deal with their own emotions and autism and not have to also fight for help.
So back on the topic of Sam's new school. We go in for his play based assessment and in the room we have Sam's Speech therapist, Occupational therapist, school psychologist and oddly enough not his teacher. In any case they begin the assessment and Sam is wandering around the room doing his thing, and of course not paying any attention to them. They get him seated and are trying to get him to comply with the assessment, not using one single aba method or discrete trial training method and of course he is not doing anything. So I get the bag of motivators (favorite toys, snacks) that I brought from home and I ask if I can try, so I get down on the floor show him one of his favorite yo gabba gabba books and begin. He immediately starts paying attention and doing the tasks in front of him. The problem with this picture is that I am down on the floor conducting my own child's assessment at his school in a room full of professionals that claimed to use ABA methods and Discrete Trial Training. Not one of them even tried to use those methods for my son. What use is there in taking Sam to a school that refuses to help him in the way that is not only absolutely necessary for him to learn and not only that but it is documented as such.
At the end of the assessment they leave and then come back in with a report of everything for us all to look over. I won't go over everything in detail but two issues in particular stuck-out. They began to discuss with me that Sam did not use his PECS book properly at school. Which is odd because he uses it properly at home and in his ABA therapy program. They proceeded to tell me that he plays with the icons and mouth's them. The problem with this statement is that his teacher and her teaching assistant are supposedly trained in PECS and I provided them in detail what step Sam is on in his PECS program in writing. He is on phase 2 step 1 which very clearly stated that he have access to one icon at a time. And if they had taken literally 1 minute to read the program, or I don't know just listen to me when I explained it to them or actually BE trained in PECS and not just say they were, then that would have been awesome.
My second issue was that they made the statement that Sam did not communicate at all and that it was going to be a goal to help him to do that. Now, it took me a minute to not say something ugly to them.. but I held my tongue for a moment, took a deep breathe and started talking. I told them that Sam absolutely communicates, he does not speak, but he communicates. He requests items with his PECS (which they weren't using properly), he points, he physically pulls your hand to things or pushes you to things. He will come get an adult to help him if he wants something, even if he can get it for himself. He definitely needs help to broaden this and with spoken communication, but he communicates. If they were doing their job as his teachers and therapists and making that extra effort to work with him, then they would have seen that as well. We see it, BWF sees it, my parents see it, my friends and all of my family sees it.
After talking with Tracy at BWF and having some serious discussions of our own, we are most likely going to pull Sam out of preschool and increase his hours of ABA therapy at least until the Fall, and then re-approach it then. We do have an ARD meeting coming up on the 18th and we will discuss our major concerns, and ask that they provide Sam with a BCBA and that they be trained on how to work with him by the BCBA. We are also going to ask that they provide Sam with ABA therapy, after all they provide children with Speech and Occupational therapy when necessary, why not ABA. We fully expect them to say no, but we will ask and we will fight for Sam and the other children with autism that need ABA. One day we won't be stuck in the 60's of autism anymore, it won't be this arduous uphill battle to simply get the therapy that works for your child.
One day parents that receive a diagnosis of autism for their child will get to deal with the battle directly, deal with their own emotions and autism and not have to also fight for help.
Thursday, March 31, 2011
Mama Loves You Sam
This morning I buckled Sam in his car seat and talked with him as I always do.."Mama loves you Sam, you love Mama too huh" and then I kiss his little forehead and get in the car to drive to his new school. I talk to him on the way pointing things out, telling him he's going to have a fun day and see his teacher and his new friends. He looks out the window and back at me as I talk to him. I start singing one of his silly Yo Gabba Gabba songs and that always gets a smile. We pull-up to the school and get in the carpool line and as soon as we stop Sam makes his little sad face and starts crying. I hate it like any other Mom, because I don't want to see my baby cry. So I tell him, it's okay baby "Mama loves you Sam, you love Mama too huh" and I scoot my seat back, unbuckle him and hold him. (We get there about 20 minutes early so that we don't have to sit in the carpool line that gets wrapped around the block.) I hold him and he stops crying, pulls my face with his little hands and gives me a kiss. He has the best little kisses and hugs. I say "I love you my Sam, you love Mama too huh". I have imagined his voice in my head saying I love you Mama..I have dreamt of him talking and using REAL words. You see Sam babbles, he says Mama, Dada, Daddy & Odie and a variety of non-purposeful sounds but he has never spoken to me, he has never told me how he is feeling, if thinks something is great or fun, sad or scary... but one day he will. One day he will interrupt me from saying "you love Mama too huh" and he will say I love you Mama and It will be amazing. So for now... Mama loves you Sam and you love Mama too huh.
Wednesday, March 30, 2011
LIGHT IT UP BLUE
On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2.
We’re aiming to light the world blue all throughout April — city by city, town by town — by taking action to raise autism awareness in our communities.
Shop the Light It Up Blue online catalog
Click here to find out more
We’re aiming to light the world blue all throughout April — city by city, town by town — by taking action to raise autism awareness in our communities.
What you can do to Light It Up Blue
- Wear blue clothing or your Autism Speaks puzzle piece, and encourage your coworkers to do the same. Sign Up
- Light your house up blue by putting blue light bulbs in any outdoor fixtures. Sign Up
- Raise awareness for Autism online or spread the word about Light It Up Blue.
Shop the Light It Up Blue online catalog
World Autism Awareness Day
The fourth annual World Autism Awareness Day is on April 2. People, schools, organizations, and companies are hosting events around the world.Click here to find out more
Monday, March 21, 2011
Normal
Sam started preschool today and I have to say it went better than expected. My husband and I walked him into class and he cried so much I thought I was going to breakdown right then and there but we mustered up the courage to trust his new teacher, leave the classroom and make our way home. Thank God for Sam's teacher calling me an hour later to let me know that not only had Sam stopped crying but she had gotten some pictures of him with a smile on his sweet little face. Ah, relief...we made it through the first day...Sam made it through the first day. There wasn't some scary kid with a big stick waiting to beat him up or make fun of him, the teacher was so sweet and understanding and it was just all so...normal. I am so thankful for that, I don't feel normal most days so I'll take what I can get. I'm so proud of you my Sam, you're doing it and Mama's okay...after all I should have known you would be okay..you always are. I love you sweet boy.
Friday, February 25, 2011
Time to get a job..
Today we went to Sam's new school for his temporary ARD meeting. We've been preparing for this day and I can't explain how many knots I had in my stomach. Will they be kind? Will they be willing to understand Sam? Is this right? Did I prepare enough? WHY AM I DOING THIS!! I kept reminding myself that I was doing what was best for our son but couldn't get over the feeling of being robbed...robbed of the 2 years other kids get to spend at home with Mom & Dad. The feeling that my sweet 3 year old baby was having to get a job. He already goes to therapy and now school 5 days a week on top of it all. I felt panicked..was I making the right choice?
So we walk into the front office and Sam was fussy and tired because it was so early. This was especially so since Sam usually favors the night time as play time and early morning...well..not as his friend. We get our name badges and Sam is crying and we are talking politely and shaking hands..nervous and unsuspecting. We follow down this hallway of little Sam size lockers and some of the best artwork in the world and I start to feel relaxed. We go into the room and the moment I had been praying about began. I had my binder with our Sam's picture on it with every shred of paperwork that was pertinent to Sam and I began to speak. I didn't feel afraid in speaking up for my child, I felt confident..sure of what I was saying and relived that the faces staring back at me looked my husband and I with respect and kindness. I explained Sam's programs at The Brent Woodall Foundation and why Sam NEEDED ABA methods to learn. I handed them my carefully constructed "notebook of Sam" like it contained the meaning of life. I instructed them what page to look at and pointed out that his previous therapy was not effective and why. I gave them the list of goals that had been put together by Sam's fantastic case manager Jaci and Carley, a BCBA overseeing his programs and assistant director at BWF. They went over the IDEA as we had learned about at the parent training conference and a lot of other school related paperwork. Keep in mind this was the temporary ARD which I was skeptical about initially but left with the understanding that they were doing this in an effort to get to know Sam first before creating his IEP. Oddly enough it is common for schools to create an IEP based on a single assessment, which I think is such a shame. How can a school possibly sum up a child and everything they need based on a couple of hours of interaction. In any case we are relieved and hopeful for what lies ahead.
So we walk into the front office and Sam was fussy and tired because it was so early. This was especially so since Sam usually favors the night time as play time and early morning...well..not as his friend. We get our name badges and Sam is crying and we are talking politely and shaking hands..nervous and unsuspecting. We follow down this hallway of little Sam size lockers and some of the best artwork in the world and I start to feel relaxed. We go into the room and the moment I had been praying about began. I had my binder with our Sam's picture on it with every shred of paperwork that was pertinent to Sam and I began to speak. I didn't feel afraid in speaking up for my child, I felt confident..sure of what I was saying and relived that the faces staring back at me looked my husband and I with respect and kindness. I explained Sam's programs at The Brent Woodall Foundation and why Sam NEEDED ABA methods to learn. I handed them my carefully constructed "notebook of Sam" like it contained the meaning of life. I instructed them what page to look at and pointed out that his previous therapy was not effective and why. I gave them the list of goals that had been put together by Sam's fantastic case manager Jaci and Carley, a BCBA overseeing his programs and assistant director at BWF. They went over the IDEA as we had learned about at the parent training conference and a lot of other school related paperwork. Keep in mind this was the temporary ARD which I was skeptical about initially but left with the understanding that they were doing this in an effort to get to know Sam first before creating his IEP. Oddly enough it is common for schools to create an IEP based on a single assessment, which I think is such a shame. How can a school possibly sum up a child and everything they need based on a couple of hours of interaction. In any case we are relieved and hopeful for what lies ahead.
Friday, February 18, 2011
RESOURCES
Today my husband and I went to "Maximizing Every Moment: A Parent Training Conference" put on by The Brent Woodall Foundation. Our initial reason for wanting to go was to learn about the ARD process and obviously to learn more information and resources on helping Sam. Let me say it was FANTASTIC. Thank you Tracy and everyone at BWF for doing what you do and helping Sam and so many kids out there like him. Instead of giving a play by play of the conference I have compiled a list of resources that I was able to gain from The Brent Woodall Foundation website, the conference and various places. I hope that you find something helpful! I will update this list periodically =).
NATIONAL http://rsaffran.tripod.com/ Autism, PDD-NOS, Hyperlexia, Asperger's: treatment, therapy, special education Autismspeaks.org 100 day kit Help after the diagnosis Pervasive Developmental Disorder-Not Otherwise Specified, what Sam has. www.autismcoalition.org The Autism Coalition www.autism-society.org Autism Society of America www.cureautismnow.org Cure Autism Now www.behavior.org The Cambridge Center for Behavioral Studies www.abainternational.org Association for Behavior Analysis www.asatonline.org Association for Science in Autism Treatment Asperger Coalition of the United States, Inc. Center for Disease Control Autism Information Center Website for parents/caregivers of children involved in an ABA program Applying for disability on the basis of Autism. http://www.disabilitysecrets.com/questions.html FAQ for Social Security disability & SSI disability. |
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