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.

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!!!!!!!!!!!!!!).

Write a letter to your children's teacher at the beginning of the school year

This really smoothed things for us (except with one teacher we're having ... issues with at the moment). I'm going to paste it below. I tried to introduce Caitlyn to them, go over her accomodations, provide some tips on having her in their classroom, etc. With that one exception, it worked beautifully! Feel free to snag it and insert your own particulars if you like. Or, feel free to suggest ways we might improve our Letter for middle school next year :)

To: Caitlyn’s teachers
Re: Caitlyn’s accommodations within the classroom

All of this is on record within her accommodations and the minutes from the last ARD meeting, but I thought it might be easiest to simply list them here along with any other information we (her parents) can share with you.

I like (and appreciate) daily or weekly communication depending on the class or concern with her teachers and believe this is the best way to help your class run as smoothly as possible while her accommodations are met. My email address is xxxxxxx@gmail.com and my cell phone # is xxx-xxx-xxxx. I can receive texts on that # as well if you wish to communicate in that manner.

These may change in the future depending upon the ARD accommodations agreed to as the school year progresses and as she gains study and organizational skills needing less daily support. This is the current situation:

• Organization - please record her daily homework and assignments in the school-provided planner within her binder. This ensures that at home, we are aware of what the assignments are and that they are completed by the due date. I request that if an assignment has not been recorded within the planner, that she not be penalized the -10pts per day for being late.
• Organization - her completed homework will be in her homework folder each morning. If it cannot be located within that folder, please check within the rest of the binder folders and her backpack. If the assignment is still missing, please provide an additional copy so that she can redo it that evening if we cannot locate the original.
• Organization - please do not allow her to check out more than 2 library books from the classroom or school library at a time.
• Organization - please let me know immediately if her “back up” gym shoes are missing from her classroom locker.
• Hygiene - she may need assistance or reminders to wash her hands after using the restroom. If you notice any bathroom “odors”, please send her quietly to the school nurse. I will provide additional hand sanitizer for the classroom if you require it to help her keep up with this and not spread germs to the other students.
• Hygiene - if her menses starts, please immediately send her to the school nurse, or allow her to remain in the restroom and contact me immediately. I will arrive at the school with any necessary supplies and personal clean-up assistance.
• Behavior - a praise to correction ratio of 1:5 is to be used at all times, and de-escalation procedures should be used. Please let me know how to best incorporate her accommodation necessity with your personal classroom behavior methods or charts.
• Behavior - please give her additional “personal space” and do not request or demand eye contact if she is beginning a meltdown. Either a cool down space should be provided within the classroom, or there should be one accessible to her that she can leave to locate within another approved area. You may request that she “cool down”, or she may herself request to “cool down”. This area is not to be used as a punishment or time out, but as a place for her to regain her composure and focus to return to the assignment or class discussion. Ms. Barentine successfully used this during the latter part of last year and may have suggestions or materials for you. The OT can also be consulted on setting up these area(s). A time limit of 5 to 10 minutes should be sufficient within the cool down area.
• Behavior - Her warning signs of escalation are clenching her fists, growling, attempting to hide either under her desk or with her head under her arms, passive resistance, very loud voicing, and flee attempts. If you can de-escalate during the early stages, it is possible to be back on track within moments. In the later stages, contacting Ms. XXXXXXXX or removing her from the classroom may be necessary.
• Assistive technology - using a computer or slantboard for writing assignments when reasonably possible. The OT should provide medical tubing for her writing implements that will be kept within her desk, as well as a chair cushion, banding around the front 2 legs of her chair, and/or other assistive needs that the OT deems needed at her desk or within the classroom. If you have a specific concern, please contact me and we may have something we will send from home to assist as well (such as jewelry that she can chew on, a weighted lap blanket or vest, or other sensory tools to keep her focused during class.)

Outside of these accommodations, I do have some requests. I have not yet had an ARD meeting or the opportunity to meet you, her new 5th grade teachers, so I do not yet know what will work within your individual classroom rules or physical desk set-ups.

If possible, please seat her nearest to your desk - she does need a lot of redirection and supervision. She has problems with interrupting or waiting her turn, so knowing that in advance may be helpful in assisting her to reach your classroom standards on doing so. She also does not understand concepts of personal space well and may get too close for your or other students’ comfort level with physical touch such as hugging, etc. so please be perfectly clear with her on what is allowed and what is not. Writing it down as well as the classroom rules and placing it in her folder for that class so she can refer to it may be extremely helpful.

She has many therapies during the school week after school hours and her homework time is limited, so if it is possible to break down larger assignments into smaller ones or allow some leeway on extra time allowances, we would appreciate it. There may rarely be days when such scheduling may not leave time for homework at all,  and if it is possible to give her a time extension of one day without academic grade penalty that would also be appreciated. I will communicate directly with you if there is a schedule conflict that week in advance, so it may be possible for her to complete the work ahead of that day and it is returned “on time”.

The only other circumstance we may ask for extra time without penalty is if she is unable to complete an assignment due to not understanding it and neither my husband nor I can figure it out to assist her - I expect that to be a VERY RARE circumstance but it did come up a couple of times throughout the course of last year when she had a worksheet that did not have printed instructions (the color pinwheels are a good example - I still do not understand these).

In an attempt to clarify the above, the first two deal directly with her disability so I hope she is not penalized academically for that; the third is simply something that we may be able to prevent with good communication and written assignment instructions.

My goal, again, is to assist in trying to keep this as stress-less as possible for us both with a minimum of impact on your classroom. I greatly appreciate your time and understand how limited it is. I also understand that my child is only one of many you are responsible for within the classroom. Last year’s experience showed me that communication is the key in keeping things running smoothly, and I look forward to working with you this year.

Sincerely,
AspieGrrl's mom

School year not off to the best start

The school year for dd1 is not getting off to a good start. I am not sure if I like her teacher (loved last year's) - I can deal with that. There is apparently a new diagnostician AND a new OT, so everything is FUBAR'd - and I can NOT deal with that. So I'm just pissed.

First issue is her stupid planner. No one is using the damn thing right - I know dd1 doesn't, which is WHY her accomodations state that her teachers are to be writing her HOMEWORK ASSIGNMENTS in her planner each day. So what are they doing? Having the kids copy down the assignments at the beginning of the day. Right, that really helps me know what was completed in class and what needs to be done at home O.o And no, Ms Homeroom teacher, cramming what you've assigned as homework in your 2 classes into the very last box of the planner, in cursive that I can barely read, is NOT HELPING.

Thank you very much for dating some papers with a due date but not putting the due date of assignments that are not worksheets, in the planner. It is so nice to know that something I forced my daughter to work on through her tears for 4 hours one night wasn't due for A WEEK. FARK YOU.

*deep breath*

DD1 is supposed to have a ton of stuff in each classroom or carried with her (assistive tech). That's to include an Alphamaster, bands on the front legs of her chair, a weighted lap pad, a beanbag seat cushion thing, a "Cool Down Area" with sensory input devices, medical tubing to cover her pencils, a slantboard for writing, and access to a computer if the Alphamaster is not sufficient for the assignment given.

What does she have as we're to the middle of the second week of school? Medical tubing. They've known for months now, these are existing accomodations and nothing new yet except the Alphamaster which the new OT recommended last week.

*bangs head on desk* Not only that, I am getting a run around about the ARD I requested.

I requested it verbally on 8/23 to the assistant principal. I gave the new diagnostician all her new IEE reports and requested it in writing with those documents on 8/27.

I received a call today from said diagnositician for me to come in to speak with her and the LSSP on Thursday (not an ARD, just an informal meeting). And that "we might go over some dates when we can have the ARD".

It's been so busy..

She has one evaluation scheduled for July 18th via someone her grandmother wanted to take her to in WF.
She has an eval with the child psych here at the end of the month, the one that specializes in Asperger's. I've gotten back the tests she sent in for her current teacher to fill out as well (school ends tomorrow).

I found a Social Skills group and a Sensory Motor group for her, both at rates we can squeeze out if we're very careful (I assume we can eventually use insurance for some therapies if/when we have a medical dx, but for now private pay is it) that will work with the school schedules next year and around therapy with the Spec Ed center and the child psych.

I also have a lead on a karate place that's local that specializes in special ed students and is affordable. They focus on concentration, observation, centering, balance, breathing, and coordination.

So hopefully that will all fall into place after the summer. Also hopefully, by the end of summer, we will have a DX to then call another ARD for and bring in the advocate to start fighting for more help for her via the school/accomodations.

I also obtained a letter from her montessori teacher from the year of her first evaluation with the ISD (who was never offered screenings like her public school teachers were this year) and have one promised by the owner as well. Also her complete school records from that year and I've collected and collated everything from pre-k to present as far as the school records go.

I still need her birth hospital records to eventually follow up with a dev ped if needed, her complete records from the inpatient center in '07, and records from the 2 other psychs we had consulted to add to her "Binder of All that is C related".

She did not qualify for the LEAP group (gifted) but I have concerns about that I will address next year as well. Basically I need to find out if her IEP should apply to the LEAP testing as well - her IEP allows for extra time on tests as well as verbal reading of questions vs written. Her LEAP scores were MUCH different than the results of all the testing the multi-disciplinary committee did for the ARD - like polar opposite different.

They have to score 6/8 to get into the program. She got 2/8. Now that her TAKS results are back she should have 4/8 (She achieved Commended in 2 areas, and missed the third by one freaking point). If they allow extra time on the timed math portions I believe she can hit the 6/8 and should qualify for "provisional acceptance". Her teacher was quite shocked at her low scores.

I realize we are asking for a lot for a special ed student to be admitted to the gifted program (in terms of what that teacher can deal with in her LEAP group) but I don't believe the two are mutually exclusive, and I do believe that she IS gifted in certain areas (actually many areas, but at this age she is struggling with basic math memorization/timing, yet can work complicated problems in her head and get the answer right without knowing how to show how she did it). She would really benefit from the program IMO if we can get it.

Spec Ed Center interesting

Had counseling last night, and finish Love&Logic class tomorrow.

I told the fam counselor about the email from the gym teacher and my concerns, and she talked pretty in depth about some stuff she suggested we ask to be in her accomodations at this next ARD.

Privately, that psychologist told us right before we left that she was shocked dd was ED and not AU O.o then told me I should really hire an advocate..

okay when an employee of the ISD working the special ed center tells me that.. yeah.. how fucked up is this?

Anyway. She pointed me to some Social Stories scripts to go over with dd1, and gave me some input on the new behavior and chore chart we're going to try. Last night's topic in group was time outs and practice academies, so we'll be focusing on that this week.

Gym incident today

I received this email from her gym teacher.

Quote:

Hello Mrs. M. Catlin had some behavior problems today during P.E. I believe the defiant and unnecessary behavior started because she didn't have proper shoes for class. 1. I asked Catlin to have a seat on the bench so the soccer balls wouldn't hit her. She refused to move from my office and was clinching her fists. After asking her numerous times to go and have a seat, I placed my hand on her back to guide her towards that direction. As this was happening, Catlin decided to throw her elbows...one hitting the door frame and the other almost coming into contact with me. Coach Hooper noticed this from across the gym and came to help during this situation. 2. Eventually Catlin went over to the bench with her oops letter. During this time she was growling and stomping her feet causing a class disruption. She then proceeded to crumple it up and throw it on the floor and bench numerous times. I finally asked her to please unwad the paper and hand to me...she threw it at me...so we had to practice the correct way to respond to the teachers request. This went on for an extended period of time. 3. Coach Hooper and I asked Catlin to go to the bathroom and wash her face, thinking this would help her calm down. She was not happy with this suggestion and started to scream and growl more. Again, after numerous requests, she eventually went to the bathroom, came out and stood next to me for the remainder of the class period. During this time she was still clinching fists, growling, and would not respond to my questions about her behavior. 4. At the end of class, I asked Catlin to come stand by me at the gym doors so we could talk with Mrs. Barentine. She said the she didn't want to move and yelled out that she didn't want everyone looking at her. I then told her we could wait outside the gym and wait for her teacher there. While we were sitting outside, talking with Mrs. Barentine, Catlin didn't want to apologize so she started banging the back of her head against window. After being told to stop or we would have to stop her from causing injury to herself, she still continued. After Coach Hooper placed his hand on her arm to move her away from the window, she stopped. 5. When Catlin finally apologized, after being told repeatedly, she refused to look at Coach Hooper or myself rolling her eyes up and talked in a deep growl. Please feel free to contact me with any questions or concerns. I just wanted to make you aware of our observations.

In the past, I've responded by acknowledging the email, letting them know we will be discussing it at home, etc.

I feel like I'm not doing enough, but I don't want to cross the line to becoming a PITA for her teachers. I do expect Caitlyn to be following the rules but I DON'T know how much control she has during these meltdowns. I feel like everything is being labeled "her behavior" due to the label she's got now, and that she is being forced into more transitions, power struggles and triggers now than compared to before her educational DX where they *seemed* to be focusing more on NOT setting her off, being more gentle correction, etc.

This is what I replied with this time:

Quote:

Thank you for informing me of the events of today. I was under the impression that she was keeping tennis shoes at school for "just in case" she forgot. I've asked Mrs. XXXXX to let me know if those are no longer there. I try to ensure she is wearing the proper footwear on gym days. We have a board at home in her "zone" to remind her on which days gym is and that she needs to have her tennis shoes. I know she is not allowed to participate without them; what else is said to her at this time, and is there any additional punishment? We will address the rest with her at home this afternoon and then next week with the family counselor. Her next psychology appt is not until May 13th but I will bring this letter to that Dr. so she is aware of the escalating behavior and particulars. Was any praise to correction ratio used, de-escalation, etc? Trying to transition her to different places during a meltdown situation will impede de-escalation as we have found (moving to the bench,to the bathroom, at the gym doors, then outside the gym). I myself have had to come in to remove her from the building on two occasions within the past month and it is an intensive process and power struggle so I sympathise greatly. Have Ms (PRINCIPAL) or Ms (DIAGNOSTICIAN) or the counselor (I'm sorry, I forget her name) been made aware of the incident, including the head banging? Also on the final point below, #5, please do not attempt to force her to look you in the eye as she is very uncomfortable doing so and finds it hard to remember her alternatives during or following a meltdown (she has been taught to look at the ear or nose of the person addressing her to show that she is listening and paying attention, since she finds direct eye contact disturbing). Holding a finger up towards your face at chin level, but not pointing at your eyes, can serve as a focus point ("Caitlyn, look at my finger, I need to know you are listening to me"). You may contact me at any time at this email address if you have questions or need to relate anything, even if it seems minor, as we do try to bring all of these things up with the counselor and they help greatly in pinning down where she is having issues, what coping skills she may need, and what her triggers may be. I really appreciate it. You may also contact me directly at XXX XXX XXXX (home) or XXX XXX XXXX (cell) if my presence is needed to remove her. I am willing and able to be at the school when a meltdown occurs to assist in de-escalation if it is needed.

Is this HELPFUL for her teachers, or too much to handle? Am I crossing the line from concerned, supportive parent to "ZOMG coddle my precious snowflake", or is this more the type of response that they need to figure out how to handle her?
~~~~~~
Oh and I'm really torqued about this line:

Quote:

defiant and unnecessary behavior

This is a gym teacher. She isn't qualified to say that! And that line is specifically what is setting me off to thinking that they aren't trying as hard now that she's labeled ED.