.jpg)
Tuesday, September 28, 2010
Update: iPad permission success!
The AT team has agreed to a trial with the iPad! :) I'm so very, very excited! I hope this works out as well for Caitlyn as I think it will, and am really looking forward to using some of the apps I've been checking out!
Our first family counseling meeting of the year
Did not go very well. Caitlyn was not having a good day and spent most of the session spinning around in her chair, crawling under the conference table, or playing with various items in the room. She did not want to participate in the discussion at all. I hope that next week she will open up some more.
DS (Dear son) was pretty honest about how he is feeling about things. He is jealous of the time my husband and I have to spend on her, especially daily with homework and hygeine. This really brings home to me that we desperately need a reduction in homework accomodation, because we should be spending more time with DS or doing family things.
This year is a new counselor for us and we only get 6 sessions, so I'm not sure what to expect this time around. Next week will also start some new parent class offerings following counseling, and we're going to do a trial of putting DS and Caitlyn in the middle school youth group instead of elementary based on the Spec Ed center's recommendation (they have quite a few 6th and 7th graders show up for the later class, versus the current class being mostly k-2nd and so not "peer" for Caitlyn to have social training with). I hope it goes well.
DS (Dear son) was pretty honest about how he is feeling about things. He is jealous of the time my husband and I have to spend on her, especially daily with homework and hygeine. This really brings home to me that we desperately need a reduction in homework accomodation, because we should be spending more time with DS or doing family things.
This year is a new counselor for us and we only get 6 sessions, so I'm not sure what to expect this time around. Next week will also start some new parent class offerings following counseling, and we're going to do a trial of putting DS and Caitlyn in the middle school youth group instead of elementary based on the Spec Ed center's recommendation (they have quite a few 6th and 7th graders show up for the later class, versus the current class being mostly k-2nd and so not "peer" for Caitlyn to have social training with). I hope it goes well.
Turned down on the iPad
Very discouraged right now that the AT Team has turned down our request to use an iPad for Caitlyn instead of the Alphasmart. I have written back and urged them to reconsider in light of her full disability needs, including behavior, rather than simply denying it based on that the Alphasmart will do word processing.
Sunday, September 19, 2010
Where is the line between disability and tween attitude?
This is something we struggle with daily. I don't consider myself a "precious little snowflake" parent, but I find it hard to judge when Caitlyn is being purposefully defiant and when her disability is interfering with her doing something. It can be anything from making her bed, to remembering to bring something specific home from school. This week alone she left the camera her Big Sister bought her in her desk at school, still has not brought home the Tree Ring assignment from her Science Journal, and we had to deal with a major meltdown over cleaning her room Friday night so that she could go to a special ed camp this weekend.
I am just at a loss. I feel like if I continue to expect her to receive no penalty on this tree ring paper (because I've asked multiple times now for the teacher to make sure it's in her binder before she comes home) that I'm helicoptering and preventing her from suffering the natural consequence of an action. On the flipside, I have asked the teacher multiple times, and without that grade, Caitlyn's failing science this six weeks so far. What to do?
I am just at a loss. I feel like if I continue to expect her to receive no penalty on this tree ring paper (because I've asked multiple times now for the teacher to make sure it's in her binder before she comes home) that I'm helicoptering and preventing her from suffering the natural consequence of an action. On the flipside, I have asked the teacher multiple times, and without that grade, Caitlyn's failing science this six weeks so far. What to do?
Wednesday, September 15, 2010
The importantance of clarity in remedy seeking
Two weeks ago, Caitlyn had her first states and capitals test, which involved 4 states (8 items to remember). She made a 100 on this and we spent 2-3 hours that week studying it (a reasonable time for us - memorization is one of her weakest skills.)
Last week, they were supposed to do 11 states (22 items to remember). This is beyond her threshold, as I've learned. The way the testing was designed was that students were given a blank map with the state boundaries drawn on, and were to write all state names and capitals from memory. This is 5th grade, by the way. She froze completely and simply sat at her desk until the papers were collected. She was assigned a make up test for the following Monday; we spent a good 7 hours studying (in addition to what we'd done through the week). She again made a 100 on the makeup test.
I emailed her teacher for that course and explained what had happened (her anxiety, threshold for memorization etc). I asked if she could either be given extended time for complex memorization testing, or if it could be broken down into smaller chunks (10 items or less). I did not expect a quick reply, and since this is not yet included in Caitlyn's IEP, I wasn't sure if the teacher would go for it.
This morning, to my immense glee, I received an email that the OT had prepared alternative testing for Caitlyn; she'll do 2 tests for each 1 unit planned (half the amount at a given time), AND will have a word bank to use for prompting herself. WOOHOO!!
I feel confident that she will continue to master the material and succeed in the curriculum if we continue to receive this type of support/accomodation. She is a very smart child; sometimes she just needs a little extra time or support to succeed.
Last week, they were supposed to do 11 states (22 items to remember). This is beyond her threshold, as I've learned. The way the testing was designed was that students were given a blank map with the state boundaries drawn on, and were to write all state names and capitals from memory. This is 5th grade, by the way. She froze completely and simply sat at her desk until the papers were collected. She was assigned a make up test for the following Monday; we spent a good 7 hours studying (in addition to what we'd done through the week). She again made a 100 on the makeup test.
I emailed her teacher for that course and explained what had happened (her anxiety, threshold for memorization etc). I asked if she could either be given extended time for complex memorization testing, or if it could be broken down into smaller chunks (10 items or less). I did not expect a quick reply, and since this is not yet included in Caitlyn's IEP, I wasn't sure if the teacher would go for it.
This morning, to my immense glee, I received an email that the OT had prepared alternative testing for Caitlyn; she'll do 2 tests for each 1 unit planned (half the amount at a given time), AND will have a word bank to use for prompting herself. WOOHOO!!
I feel confident that she will continue to master the material and succeed in the curriculum if we continue to receive this type of support/accomodation. She is a very smart child; sometimes she just needs a little extra time or support to succeed.
Monday, September 13, 2010
On the subject of private evaluations - Just Do It
Even if you are 100% in agreement with your school district's evaluation of your child, ask for an IEE. (State reasons for disagreeing, though). Why? Think of the evaluation as a consent to a major surgery that has the potential to affect your child for their entire lives. Even if it all sounds good, it's so big that it's scary - don't you want a second opinion?
The school district must pay for an IEE (or show cause for denying you one, which you may need later if you ever end up in Due Process Hearing.) If they say "no", insist that the denial and the reason for the denial be noted in the minutes of the IEP meeting. They can provide you with a list of local professionals who they have deemed qualified to do them, or they can provide you with a list of the qualifications a professional must have for their IEE to be acceptable if you choose your own professional. You can request one per year if I recall correctly. I will confirm this and edit to add the link confirming or denying it. The IEE may agree with, disagree with, or ADD TO the school's evaluation. Maybe they agree that your child codes for Autism, but they also catch that they code for ADHD, ED, a learning disability, or other co-morbidities that will open more doors for you in accomodations later down the line with the schools.
Now, go completely outside the district. An IEE is still an EDUCATIONAL evaluation. It may not provide you with a medical diagnosis (depending on the professional involved).
If you have insurance, make an appointment with a developmental pediatrician or child psychologist. Try to find a CP who specializes in or is familiar with Asperger's/Autism in girls if at all possible (if applicable, ie your child IS a girl...). This will get you a medical diagnosis. If you don't have insurance, scrimp and save as you can and try to find someone that works on a sliding scale basis and may only need to retest certain areas of the evaluation (ie you know your child doesn't have any cognitive problems/learning disabilities, but you want them specifically screened only for Autism/Asperger's/PDD.) A medical diagnosis will lead to insurance coverage of some therapies and assistive technology, or you can apply for Social Security Disability based on it (long story there and it does take time, sometimes years) that may eventually provide your child with insurance that may cover therapies or assistive technology.
If the IEE determines that your child is not autistic, but you obtain a medical diagnosis of Autism, you have firm standing to insist that your child be accomodated "based on need, not by label".
And that is where we are in our journey right now; we have an ED label with the school district, but multiple medical diagnoses from independent medical evaluations we did over the entire summer. We actually did this *twice*, with 2 practices. I have some testing from her previous teachers to submit to the 2nd one before I will receive their report. (Because I figured hey, maybe I'm paranoid, but they can't disregard two completely independent reports as easily as one - ie the "you shopped for a doctor to say what you wanted" angle).
And if there is one thing I have learned about paranoia, it is to pay attention to it. If there is any potential minefield that I can disarm BEFORE stepping into an IEP meeting, I am better prepared.
The school district must pay for an IEE (or show cause for denying you one, which you may need later if you ever end up in Due Process Hearing.) If they say "no", insist that the denial and the reason for the denial be noted in the minutes of the IEP meeting. They can provide you with a list of local professionals who they have deemed qualified to do them, or they can provide you with a list of the qualifications a professional must have for their IEE to be acceptable if you choose your own professional. You can request one per year if I recall correctly. I will confirm this and edit to add the link confirming or denying it. The IEE may agree with, disagree with, or ADD TO the school's evaluation. Maybe they agree that your child codes for Autism, but they also catch that they code for ADHD, ED, a learning disability, or other co-morbidities that will open more doors for you in accomodations later down the line with the schools.
Now, go completely outside the district. An IEE is still an EDUCATIONAL evaluation. It may not provide you with a medical diagnosis (depending on the professional involved).
If you have insurance, make an appointment with a developmental pediatrician or child psychologist. Try to find a CP who specializes in or is familiar with Asperger's/Autism in girls if at all possible (if applicable, ie your child IS a girl...). This will get you a medical diagnosis. If you don't have insurance, scrimp and save as you can and try to find someone that works on a sliding scale basis and may only need to retest certain areas of the evaluation (ie you know your child doesn't have any cognitive problems/learning disabilities, but you want them specifically screened only for Autism/Asperger's/PDD.) A medical diagnosis will lead to insurance coverage of some therapies and assistive technology, or you can apply for Social Security Disability based on it (long story there and it does take time, sometimes years) that may eventually provide your child with insurance that may cover therapies or assistive technology.
If the IEE determines that your child is not autistic, but you obtain a medical diagnosis of Autism, you have firm standing to insist that your child be accomodated "based on need, not by label".
And that is where we are in our journey right now; we have an ED label with the school district, but multiple medical diagnoses from independent medical evaluations we did over the entire summer. We actually did this *twice*, with 2 practices. I have some testing from her previous teachers to submit to the 2nd one before I will receive their report. (Because I figured hey, maybe I'm paranoid, but they can't disregard two completely independent reports as easily as one - ie the "you shopped for a doctor to say what you wanted" angle).
And if there is one thing I have learned about paranoia, it is to pay attention to it. If there is any potential minefield that I can disarm BEFORE stepping into an IEP meeting, I am better prepared.
Accommodations continued - class goals
Have you ever really thought about the term "Behavior Intervention Plan"? I read an excellent web page today that went into great detail about a Plan works best when it's used by a Team, instead of simply being a list of expectations for one individual. The Team consists of the special education student, the Parent(s), the Class, the Teacher(s), and the Administrators.
So, why not set goals for your whole team instead of just your child? If everyone works as a Team, the Behavior that you want can be more easily attained; the Behavior that you don't want can be more easily shown alternatives; and everyone can learn from the experience, not just the Student.
With that in mind, we're going to ask for these goals to be implemented in Caitlyn's BIP. This is just my working copy, haha, so it still needs a lot of work! I want to be able to think of concrete measurable goals for the above for "probe taken 4 out of 5 times" and such - just like is expected of Caitlyn.
So, why not set goals for your whole team instead of just your child? If everyone works as a Team, the Behavior that you want can be more easily attained; the Behavior that you don't want can be more easily shown alternatives; and everyone can learn from the experience, not just the Student.
With that in mind, we're going to ask for these goals to be implemented in Caitlyn's BIP. This is just my working copy, haha, so it still needs a lot of work! I want to be able to think of concrete measurable goals for the above for "probe taken 4 out of 5 times" and such - just like is expected of Caitlyn.
BIP goals for her class:
- To have staff and peers educated about Asperger's
- To show by example and discussion how to cope with frustration, anger, and dissappointment
- To show acceptance of learning differences and abilities with praise or modification
- To involve Caitlyn in decision making regarding learning and social interactions.
- To offer tasks which focus on areas of Caitlyn's strengths and personal interests.
- To have planned opportunities for Caitlyn to demonstrate abilities.
- To value Caitlyn for her difference, not in spite of it.
Accommodations continued - Behavior and Assistive Technologies
We are going to get Caitlyn an iPad (if we get the proper consent from the school) to use instead of the AlphaSmart she has been provided because it has such a limited use and cannot be taken home. I read an excellent article here that detailed how wonderfully this device can be harnessed for special needs children. I'm really looking forward to it helping her not only in class, but at home!
- Be referred to appropriate Special Education counselor or case manager if meltdown occurs to address cause, ownership of behavior, and alternative outcomes instead of punitively placed in administration office.
- Be placed in adaptive Physical Education. Measurable goals should include mastery of monkey bars, jumping rope, walking a balance beam, running safely/addressing gait and movement issues, eye/hand coordination (catching and throwing different appropriate objects/balls), eye/foot coordination (ie kicking a ball), spacial recognition, observation, and reaction.
- Be provided appropriate keyboarding class and instruction in order to appropriately use given assistive technologies such as the AlphaSmart.
- Parent to provide iPad and appropriate applications/syncing ability with existing classroom technology/charging cord to replace AlphaSmart. Parents agree download ability will be locked with password protection unavailable to student and that no non-educational games or distractions will be on provided iPad. Wi-Fi connection may be used at teacher discretion and will be unable to be used without school’s WEP key. Sound may be used at teacher discretion with or without Parent-provided earbuds.
- Teachers to be given instruction on appropriate uses of iPad for given class assignments. Parent will provide handout(s) on included software capabilities dependant on which applications Parent purchases/loads.
- iPad applications will include but not be limited to a Visual Schedule; word processing program; calendar; behavior/incentive reward app; Social Stories; Visual Tutorials; e-textbooks if available/applicable; e-workbooks if available/applicable; flashcards and memorization improvement apps. Word correction/substitution of word processing program will be turned off if ability to do so is present.
- iPad will be configured to a Google account (for Google documents) that can be accessed via any school computer by teacher, aide, or administrator to print out. Documents on Google update in realtime, save automatically every 5 minutes, can be used with multiple participants, and do not require the iPad to be physically attached to any school computer for downloading/printing off of assignment. Parent can view assignments at home in real time using said Google documents account.
- Parent will provide handout(s) on how to use Google documents for teacher(s)/aide(s)/adminstrator(s) if needed.
What we're going to ask for at the upcoming IEP/ARD
This is really, really long, so I'm going to break it down into sections. This one is about her homework, which is currently taking us approximately 3 hours a day (due to particular subjects), 7 days a week. That's not workable with her needs at home and private therapy appointments, etc. Testing is also an issue; on her most recent test she scored a 0 - she didn't write down anything at all because she froze up completely. Memorization is a major issue; multiplication tables last year nearly killed us. Now that we're working on states and capitals, she can't do 10+ of them in a week. She had no problem the previous week with the smaller assignment of 4 states and capitals.
Desired Accommodations:
- Monitoring during independent work
- Read, simplify, clarify directions on assignments and tests, including standardized tests
- Additional time given to retrieve details when answering questions verbally by 25%
- Extended time to complete assignments and tests, including standardized tests up to 50%
- Extended time of 50% for complex memorization assignments before testing OR
- Breaking down memorization assignments into smaller testing sections if 70% or better mastery is not being attained on pre-test
- Science and Social Studies assignments modified in length by 50%
- Reduced homework assignments by 50%
- Additional time for homework given of 1 day if needed. Parent will email communication to teacher of why time is necessary (therapy appointments that afternoon, meltdown, not understanding instructions for assignment given, not all materials present for assignment) that night for the teacher to access in the morning and will also note in Caitlyn’s planner why the assignment is not yet complete.
- Check with Caitlyn prior to test taking to determine her anxiety level and prompt to utilize relaxation techniques.
- Each homework assignment clearly written in the appropriate class square of Caitlyn’s planner by the aide or teacher of that class
- Review all homework assignments are easily identified and written in Caitlyn’s planner before going home at end of day. Due date for each assignment should be clearly marked on corresponding square in planner to prompt Caitlyn to turn in assignment during that class time.
- In each class, Caitlyn’s binder/bag/folder(s) to be checked, as applicable, before an assignment is declared “missing”.
- Parent emailed that day if assignment is missing.
- Review all homework materials are present and easily identifiable in Caitlyn’s binder, folder, or bookbag as applicable.
- No penalty to grading of late assignments if 11-15 were not provided.
Saturday, September 11, 2010
Welcome to Acronym Hell 101
You'll notice many, many acronyms throughout this blog. Some you may be familiar with, others you may never have heard of. If you are brand new to your journey to advocating for your child, these can seem overwhelming and complicate anything you try to look up or understand in communications from the school.
I'm going to provide a short list of the most commonly used acronyms. A cheat sheet, if you will! This list is by no means complete - but hopefully it will be enough for everyone to understand my blog. I'm also going to link to what they refer to, if applicable.
I'm going to provide a short list of the most commonly used acronyms. A cheat sheet, if you will! This list is by no means complete - but hopefully it will be enough for everyone to understand my blog. I'm also going to link to what they refer to, if applicable.
- FAPE - Free and Appropriate Public Education
- IDEA - Individuals with Disabilities Education Act
- LRE - Least Restrictive Environment
- BIP - Behavior Intervention Plan
- 504 Plan - Covers learning problems, allergies, physical issues accomodations in a school, for individuals who do not meet the criteria for an IEP.
- IEP - Individualized Education Plan. Accomodations for a child found to be Special Needs.
- RTI - Response To Intervention. Used by many schools districts now before referring for a special education evaluation.
- OT - Occupational Therapist
- PT - Physical Therapist
- LSSP - Licensed Specialist in School Psychology
- AT - Assistive Technology
- EBD/ED - Emotional Behavior Disorder/Emotional Disturbance
- AU - Autism
- FBA - Functional Behavioral Assessment
- IEE - Independent Educational Evaluation
How to create "The Binder"
The Binder may be the most important tool you can have for your child. It can be useful at IEP/ARD meetings; doctor's visits; therapist's visits; interviews with new potential professionals; filing for SSDI; contesting an SSDI denial; and more.
You'll need a good 3" binder that you're comfortable flipping through. I really like the ones with the zipper on the outside but these can be hard to find larger than a 2". I repurposed one I'd had custom made for couponing to become ours; I obtained it on an Etsy alchemy listing. (It says 2", but we went with a 3").
The black strap on the left lets me carry my netbook with me (this was before I got my iPhone), the entire thing zips up, and it has a thick webbed carrying strap on the spine so that I can wear it like a messenger bag. The best part is that since it's a cover, if the binder ever breaks all I have to replace is the actual binder.
Now, you want to put EVERYTHING that involves your special needs child within this binder.
I use index tab divider pockets instead of just tabbed solid sheets. Smaller pieces of paper fit neatly into these for the appropriate sections. Or, for example, I put the log of our ARD meetings in the pocket for the ARD section for quick reference. Ditto therapies, etc.
*You don't have to include the last one, but I'm constantly suprised at how many times I'm asked to provide this information. Sometimes it isn't actually required, just requested; other times, such as when dealing with SSDI, it's required. If you do carry these items with you, guard them with your life!
It can be hard to organize at first, but then it becomes routine. You carry it to therapy, you open it up, you write down today's date on the log and close it back up. You receive new ARD paperwork, you throw it into the 3hole puncher, you put it in the ARD section. Etc.
As it gets full and possibly hard to find the things you want to refer to (ARD paperwork is notorious for this!), use Post-it notes, flags, highlighters - anything that will help you make it easy to use. I like Post Its because not only can they stick off the page like a tab, but I can write on them to remember what I was going to ask about that particular thing.
You'll need a good 3" binder that you're comfortable flipping through. I really like the ones with the zipper on the outside but these can be hard to find larger than a 2". I repurposed one I'd had custom made for couponing to become ours; I obtained it on an Etsy alchemy listing. (It says 2", but we went with a 3").
The black strap on the left lets me carry my netbook with me (this was before I got my iPhone), the entire thing zips up, and it has a thick webbed carrying strap on the spine so that I can wear it like a messenger bag. The best part is that since it's a cover, if the binder ever breaks all I have to replace is the actual binder.
Now, you want to put EVERYTHING that involves your special needs child within this binder.
- "Letter to a Stranger"
- Medical reports
- Psychiatric reports
- Testing results of any kind
- Report Cards, Progress Reports, BIP percentiles reports
- Letters from Teachers and Mentors about observed behavior
- Print outs of all emails from Teachers or other related professionals
- Print outs of all emails from any medical professionals
- ARD/IEP reports, updates, consents
- Any disciplinary sheets (like detention forms)
- Early Childhood Intervention reports
- if necessary, Birth Records from the hospital (APGAR scoring, etc)
- List of developmental milestones reached and at what age
- any writing, artwork, or school assignments that stood out to you as an example of something your child is seriously struggling with or seemed "off"
- A log of scheduled ARD meetings to refer back to, with a VERY brief synopsis of what was discussed or agreed to
- A list of accomodations in place
- A list of accomodations desired but not yet obtained
- A log of scheduled therapies with dates (your insurance may only cover a certain # of visits per year, so this is a good idea to keep track)
- A log of any attendance to events that your school's Special Ed department holds (Family Counseling, Love and Logic parenting courses, Emotion Coaching courses, etc).
- Birth certificate and Social Security Card*
I use index tab divider pockets instead of just tabbed solid sheets. Smaller pieces of paper fit neatly into these for the appropriate sections. Or, for example, I put the log of our ARD meetings in the pocket for the ARD section for quick reference. Ditto therapies, etc.
*You don't have to include the last one, but I'm constantly suprised at how many times I'm asked to provide this information. Sometimes it isn't actually required, just requested; other times, such as when dealing with SSDI, it's required. If you do carry these items with you, guard them with your life!
It can be hard to organize at first, but then it becomes routine. You carry it to therapy, you open it up, you write down today's date on the log and close it back up. You receive new ARD paperwork, you throw it into the 3hole puncher, you put it in the ARD section. Etc.
As it gets full and possibly hard to find the things you want to refer to (ARD paperwork is notorious for this!), use Post-it notes, flags, highlighters - anything that will help you make it easy to use. I like Post Its because not only can they stick off the page like a tab, but I can write on them to remember what I was going to ask about that particular thing.
Yes, my 10 year old shops at Victoria's Secret
SHHHHHHHHHH!
Because this is truly the best-kept secret out there for sensory-sensitive girls. How many of you out there deal with "The Underwear Meltdown" in the mornings? Do you have 3 drawers full of sixty billion pairs of undies in 6 different sizes and cuts, and your child can't find one pair that "feels right" that morning?
Yes, Victoria's Secret can end this battle... for a select range of sizes, of course. I'm talking about the Body by Victoria Bare Ultimate Hiphugger at 3/$30 or $11.50 each.
These are not sexualized underwear for children. What they *are*, is totally seamless (it's some sort of stitch-witch product used to close the edges) and magical no-unraveling trimmed openings that don't contain a binding of any type. Totally smooth, and not risque. These cover more than most brands we'd tried.
The sizing guidelines adjusted for a child would be as follows:
X-Small 8/10
Small 10/12
Medium 12/14
Large 14/16
X-Large 16/18+
They also have a similarly constructed Ipex Wireless Bra that starts at a 32A. I know a regular bra is torture for me (minimal sensory issues), so I can't imagine trying to put a regular bra on a sensory-sensitive child.
It may be difficult to have your Aspie grrl sized properly (issues with being touched, the large store, bright lights etc) but their return policy is good; ask about it. It may be your easiest bet to take several sizes home and then try them out and return what doesn't work. Sign up for the credit card if you can for the additional discounts; while these prices won't break the bank, unfortunately the stitchwitch construction used only lasts about 6 months before seperating at the "seams".
This made our mornings SO much easier, right next to seamless socks. Unfortunately the seamless socks I've found? Aren't totally seamless. In the winter at least, we can get away with the chenille type "warm fluffy" socks that appear everywhere for $1-$6 per pair (and proceed to shed everywhere for awhile, sigh).
Because this is truly the best-kept secret out there for sensory-sensitive girls. How many of you out there deal with "The Underwear Meltdown" in the mornings? Do you have 3 drawers full of sixty billion pairs of undies in 6 different sizes and cuts, and your child can't find one pair that "feels right" that morning?
Yes, Victoria's Secret can end this battle... for a select range of sizes, of course. I'm talking about the Body by Victoria Bare Ultimate Hiphugger at 3/$30 or $11.50 each.
These are not sexualized underwear for children. What they *are*, is totally seamless (it's some sort of stitch-witch product used to close the edges) and magical no-unraveling trimmed openings that don't contain a binding of any type. Totally smooth, and not risque. These cover more than most brands we'd tried.
The sizing guidelines adjusted for a child would be as follows:
X-Small 8/10
Small 10/12
Medium 12/14
Large 14/16
X-Large 16/18+
They also have a similarly constructed Ipex Wireless Bra that starts at a 32A. I know a regular bra is torture for me (minimal sensory issues), so I can't imagine trying to put a regular bra on a sensory-sensitive child.
It may be difficult to have your Aspie grrl sized properly (issues with being touched, the large store, bright lights etc) but their return policy is good; ask about it. It may be your easiest bet to take several sizes home and then try them out and return what doesn't work. Sign up for the credit card if you can for the additional discounts; while these prices won't break the bank, unfortunately the stitchwitch construction used only lasts about 6 months before seperating at the "seams".
This made our mornings SO much easier, right next to seamless socks. Unfortunately the seamless socks I've found? Aren't totally seamless. In the winter at least, we can get away with the chenille type "warm fluffy" socks that appear everywhere for $1-$6 per pair (and proceed to shed everywhere for awhile, sigh).
Friday, September 10, 2010
This is my fourth baby.
I have 2 daughters and a son, but this is the baby that makes everything possible.
This is my iPhone, but a refurb'd Touch will work just as well (sorry, I'm not familiar with a non-Mac product, like a Droid device, to recommend - if you are, please mention it in the comments.) You can get a refurb iPod Touch at the Apple store for $149. For the Touch, you can do anything you can with the phone (except calling) with a wi-fi connection. As most schools that have Wi-Fi will not give out the WEP key (sucks when you've saved links and realize you can't access them at an ARD) - make sure to save your documents by syncing your Awesome-Notes with google docs (where you have helpfully copy/pasted the relevant information).
I use the included Calendar (very functional!) to keep track of our therapy appointments, IEP and ARD meetings, Big Sister outings, doctor appointments, and medication refill reminders. The included note system is limited, however, and I prefer the app "Awesome Notes". I have my gmail synced to the phone so that I am ding'd every time I get an email (often from a teacher, doctor, or therapist); and I have my notes as above synced to google docs. It is amazing how much information you can have on you that fits in your pocket.
The Facebook app allows me to check for notifications to posts or questions I've made to various networking groups or people.
What do you use to keep yourself organized in the overwhelming scheduling of caring for a special needs child?
 |
| iPhone |
This is my iPhone, but a refurb'd Touch will work just as well (sorry, I'm not familiar with a non-Mac product, like a Droid device, to recommend - if you are, please mention it in the comments.) You can get a refurb iPod Touch at the Apple store for $149. For the Touch, you can do anything you can with the phone (except calling) with a wi-fi connection. As most schools that have Wi-Fi will not give out the WEP key (sucks when you've saved links and realize you can't access them at an ARD) - make sure to save your documents by syncing your Awesome-Notes with google docs (where you have helpfully copy/pasted the relevant information).
I use the included Calendar (very functional!) to keep track of our therapy appointments, IEP and ARD meetings, Big Sister outings, doctor appointments, and medication refill reminders. The included note system is limited, however, and I prefer the app "Awesome Notes". I have my gmail synced to the phone so that I am ding'd every time I get an email (often from a teacher, doctor, or therapist); and I have my notes as above synced to google docs. It is amazing how much information you can have on you that fits in your pocket.
The Facebook app allows me to check for notifications to posts or questions I've made to various networking groups or people.
What do you use to keep yourself organized in the overwhelming scheduling of caring for a special needs child?
Important resources for advocating
Please don't miss the carousel links at the bottom of the page; they are handpicked books by me that I've found to be most helpful in dealing with schools or at home. You may be able to find them at your local library - mine even carries several in e-book format (which can be a lifesaver when downloaded on my iPhone so I can consult it during an IEP/ARD meeting!).
I'll be adding a list of helpful links to the blog this evening on the left hand sidebar. Please let me know if there is a great one I should add!
I'll be adding a list of helpful links to the blog this evening on the left hand sidebar. Please let me know if there is a great one I should add!
I don't want a keyring around her neck or arm
I'm really grateful for these necklaces that Caitlyn can wear to school. The other kids don't notice as much. The breakaway clasp comes in handy during a meltdown, and makes them playground safe as well. I do hope they will continue to expand their range of colors and shapes (Guitar? Skull with a Hairbow? Peace Sign? - the sky is the limit, designers!). Unfortunately, they are rather expensive compared to the typical sensory jewelry and are only available from Canada. If you are a retailer reading this, please consider carrying these in your store!
These are available from Kid Companions at a cost of $17.49 each, plus shipping.
Caitlyn really likes hers; it was a gift from a very, very special lady on a cloth diapering board I was a member of. We are extremely grateful to her. I plan to purchase a pink one next; maybe for Christmas!
Caitlyn really likes hers; it was a gift from a very, very special lady on a cloth diapering board I was a member of. We are extremely grateful to her. I plan to purchase a pink one next; maybe for Christmas!
Thursday, September 9, 2010
Why this blog exists
It's been a ten year journey to Caitlyn's diagnoses. During that time we've been through partial hospitalization, psychiatrists, pediatricians, school "Child Find" programs, Early Childhood Intervention, medication, and more tears and meltdowns than I can count.
In those years, I've learned a lot. Things I hope to reach out with and help others shorten their journey to getting help.
The very first and most important advice I want to share is this (it took me nine years to have someone on an internet message board give me this "key" to getting help!):
If you suspect a developmental problem with your child, please skip everything I listed above, because they CANNOT do it! You need a *medical* diagnosis for your child in order to get anything done. Schools can only "educationally diagnose" - and that label does NOT have to coincide with their medical disability.
The people you want to see ideally work as a team within a practice - a developmental pediatrician; a speech pathologist; and a child psychologist. If you can only locate a child psychologist or developmental pediatrician, that is ok; either one is qualified on their own to diagnose developmental disorders and autism.
ECI (Early Childhood Intervention, here in Texas; it may have a different name in your state) is a WONDERFUL resource. They will come to your home and help with therapies and services for your child 3 years of age or younger. However, unless a severe condition is immediately apparent, they are unlikely to proffer a diagnosis (and nor will the medical doctors you are referred to by them). But please do avail yourself of the services if they are needed; the earlier the intervention, the better.
In those years, I've learned a lot. Things I hope to reach out with and help others shorten their journey to getting help.
The very first and most important advice I want to share is this (it took me nine years to have someone on an internet message board give me this "key" to getting help!):
If you suspect a developmental problem with your child, please skip everything I listed above, because they CANNOT do it! You need a *medical* diagnosis for your child in order to get anything done. Schools can only "educationally diagnose" - and that label does NOT have to coincide with their medical disability.
The people you want to see ideally work as a team within a practice - a developmental pediatrician; a speech pathologist; and a child psychologist. If you can only locate a child psychologist or developmental pediatrician, that is ok; either one is qualified on their own to diagnose developmental disorders and autism.
ECI (Early Childhood Intervention, here in Texas; it may have a different name in your state) is a WONDERFUL resource. They will come to your home and help with therapies and services for your child 3 years of age or younger. However, unless a severe condition is immediately apparent, they are unlikely to proffer a diagnosis (and nor will the medical doctors you are referred to by them). But please do avail yourself of the services if they are needed; the earlier the intervention, the better.
Thursday, September 2, 2010
Meeting with the new LSSP and Diagnostician
Not complete, but what I did today/found out at my meeting with the new LSSP and diagnostician.
LSSP - I LIKE her. She was intrigued with the use of the iPad and specific apps for special ed students (we spent a good 15 min comparing apps on our iphones); she had no issues at all going through the "autism supplement" for which things we felt DD1 needs in her accomodations; likewise she went through her BIP with me too to make it less of the piece of confusing crap that it was and make it into something far more constructive and intervening instead of "punishment after the fact". She also has been doing anything and everything she can to get dd1 into the FOCUS group even without the AU label (since it may take some time to come to agreement on that, but dd1 needs the group NOW).
Diagnostician - had specific concerns with the BIP also and contributed a lot of thought to that, specifically lowering the degree of mastery for dd1 at this time (previously it was 4 out of 5 probes or 80%, we all felt 60% would be better WITH the newly clarified stuff). Is going to look into a diversity class or something that can be presented to dd1's homeroom so the kids will not be as apt to tease her about her assistive tech. She also recommended that perhaps the OT could bring some extra bean bags that other children could compete/work something out with the teacher to make them seem like desirable things to the other kids. Also went through and took everything from the ARD minutes and is typing them into the little "accomodations" boxes to make sure her teachers have that information at hand.
Now, I hope I don't get her in trouble, and I expressed my fear of that - but I signed consent for them to contact the family counselor we used through the Spec Ed center last year. I related how shocked she had been that dd1 was there as an ED student and not AU, and that she might have personal observations or notes that could shed more light on things. Also, that she had coached us through some things that worked/didn't work that might be able to be passed on directly to dd1's teachers (specific de-escalation techniques, use of empathy as encouragement, breaking things into tiny chunks, etc).
This is one of the first times I've really felt the school personnel were listening to me. Unfortunately, the LSSP we dealt with last year still oversees the "Autism Team" at the school, so I will still have to deal with her through all this. Those are the meetings I will bring the advocate with or pay out of pocket for the child psychologist to attend with me.
We discussed the possibility of an aide, but they both said they didn't feel it was LRE to jump right to an aide (least restrictive environment) but pulled up her current accomodations and verified that she hasn't been receiving inclusion support, which *is* the next step. A special ed teacher would come into her classroom for her most difficult classes/meltdown apt times and be available for 1-on-1 support including bathroom/hygeine needs and lunch if necessary. I'm cool with that being the next step, if it doesn't help by next semester I can renew my request for an aide.
We also, for the first time, talked about futures planning (in this case, "what happens next year when she moves to middle school"). The ARD committee (and myself) will determine where her needs are at the end of the school year, and THEY will research which of the neighboring middle schools have the best support, available staffing, or other things (like "Circle of Friends" social skills groups etc). Then I will have the option of transferring her out of our zoned school, or even out of the district if we choose to have her in the best school to meet her needs. (YES!!!!!!!!!!! CAN I JUST SAY YES!!!!!!!!!!!!!!).
LSSP - I LIKE her. She was intrigued with the use of the iPad and specific apps for special ed students (we spent a good 15 min comparing apps on our iphones); she had no issues at all going through the "autism supplement" for which things we felt DD1 needs in her accomodations; likewise she went through her BIP with me too to make it less of the piece of confusing crap that it was and make it into something far more constructive and intervening instead of "punishment after the fact". She also has been doing anything and everything she can to get dd1 into the FOCUS group even without the AU label (since it may take some time to come to agreement on that, but dd1 needs the group NOW).
Diagnostician - had specific concerns with the BIP also and contributed a lot of thought to that, specifically lowering the degree of mastery for dd1 at this time (previously it was 4 out of 5 probes or 80%, we all felt 60% would be better WITH the newly clarified stuff). Is going to look into a diversity class or something that can be presented to dd1's homeroom so the kids will not be as apt to tease her about her assistive tech. She also recommended that perhaps the OT could bring some extra bean bags that other children could compete/work something out with the teacher to make them seem like desirable things to the other kids. Also went through and took everything from the ARD minutes and is typing them into the little "accomodations" boxes to make sure her teachers have that information at hand.
Now, I hope I don't get her in trouble, and I expressed my fear of that - but I signed consent for them to contact the family counselor we used through the Spec Ed center last year. I related how shocked she had been that dd1 was there as an ED student and not AU, and that she might have personal observations or notes that could shed more light on things. Also, that she had coached us through some things that worked/didn't work that might be able to be passed on directly to dd1's teachers (specific de-escalation techniques, use of empathy as encouragement, breaking things into tiny chunks, etc).
This is one of the first times I've really felt the school personnel were listening to me. Unfortunately, the LSSP we dealt with last year still oversees the "Autism Team" at the school, so I will still have to deal with her through all this. Those are the meetings I will bring the advocate with or pay out of pocket for the child psychologist to attend with me.
We discussed the possibility of an aide, but they both said they didn't feel it was LRE to jump right to an aide (least restrictive environment) but pulled up her current accomodations and verified that she hasn't been receiving inclusion support, which *is* the next step. A special ed teacher would come into her classroom for her most difficult classes/meltdown apt times and be available for 1-on-1 support including bathroom/hygeine needs and lunch if necessary. I'm cool with that being the next step, if it doesn't help by next semester I can renew my request for an aide.
We also, for the first time, talked about futures planning (in this case, "what happens next year when she moves to middle school"). The ARD committee (and myself) will determine where her needs are at the end of the school year, and THEY will research which of the neighboring middle schools have the best support, available staffing, or other things (like "Circle of Friends" social skills groups etc). Then I will have the option of transferring her out of our zoned school, or even out of the district if we choose to have her in the best school to meet her needs. (YES!!!!!!!!!!! CAN I JUST SAY YES!!!!!!!!!!!!!!).
Subscribe to:
Posts (Atom)