New Hope

Through all our frustration over the last school year, Katie's therapist had repeatedly mentioned services she knew were available at Hayes Elementary school.  Over the summer I debated with myself what to do for Katie.  Maybe the struggles we faced last year were the natural reaction to adjusting to a new school, on top of having a less than understanding homeroom teacher, and perhaps this year would be better with a different set of teachers and the 504 plan in place that I could have beefed up to suit her needs more specifically.   But I really didn't think switching classrooms for almost every class (like in a middle school) was a very good fit for Katie, and I was seriously underwhelmed by the provision of services so far.

So when schools brought back some of their staff in Aug. I made a couple calls to see what our other options might be.  It turned out Hayes was not in our home district after all, so I would have to open-enroll her if I wanted her there. 

I called Hayes and was transferred to the director of SpEd services, explained that my daughter had needs I didn't feel were being met by her current school and asked if she could tell me, in general, what kinds of services their school offered for the types of struggles I described.  With only a brief description from me, the woman was able to tell me several things that might be possible, more that Valentine Hills had offered in a whole year. With this and the therapist's recommendation, it was clear that this would be a better fit for Katie, even if it did mean changing schools again.

I stopped by the school that evening to fill out the papers for the open-enrollment into another district.  When I walked into the office I identified myself as the mother who'd called earlier and the secretary remembered and asked if I'd been able to get my questions answered talking to the SpEd director.  I assured her that in 10 minutes of conversation I had been convinced this would be a better alternative for us.  

There was a man also standing around in the office who overheard this and casually asked me where we were coming from and what struggles we'd been having.  I told him a little about Katie and some of her needs, and I don't remember the specific wording/term he used, but he said something like, "Oh yeah, XYZ can really be an important piece for sensitive kids.", and whatever the term was, something sensory related, it was exactly the right thing for what I was describing.  Something specific to sensory processing issues that the general person wouldn't know about.  I was pleasantly surprised!

I was even more impressed when he proceeded to introduce himself as Mr. P, the principal of the school!  I knew right there that this school "get's it".  If the principal himself is familiar with the terminology and needs around sensory issues, and doesn't just leave all that to his specialist staff, then clearly it is a real focus at this school and they will have resources to help us.  I wanted to cry right there on the spot, I was so relieved!  

He talked about the importance of the right fit of teacher for kids like Katie and immediately asked me more details about her personality and learning style and promptly chose her teacher then and there. Based on her needs, he knew just who he wanted her to have.  He asked about previous services and I explained about the request for evaluation last year and being pushed into the 504 instead.  He told me that was a really backward way of looking at that process and that they have a completely different approach to it here at Hayes.  He encouraged me to go ahead and write him a letter right away to request an evaluation so we could get things rolling as soon as school started instead of having to go through the timely process of waiting for the teacher to identify her as having problems.  He even walked me right down to the office of the SpEd coordinator for their building to introduce me and let him know I'd be requesting the evaluation.  

I left that day so relieved and full of hope!  I may have even cried, if not I was certainly close.  We wouldn't have to go through another year like last year!  There were people out there who knew what to do and were eager to help!

End of a difficult year

You're probably tired of hearing me complain about Kate's school, but there were just a couple more issues I'll mention to close out that school year.

The 504 plan had stated a place would be provided for Katie to go to calm down when she got upset.  At home she has a small space behind an armchair where she likes to go, which she calls her Katie Space.  She craves the tight confined space, similar to Temple Grandin's squeeze boxes, only without any actual pressure.  No space was specifically provided at school, so Katie improvised by curling up in the space under her desk.  This was not acceptable to her homeroom teacher, however, and she felt she was "yelled at" for doing it.  Here she was, recognizing her body's need to re-regulate itself to calm down and trying to self sooth, and she felt she was punished for it.  I can understand that having her under the desk might not be ideal and could be distracting to others in class, so the teacher had every right to say this was not a valid option, but then GIVE HER ANOTHER OPTION!  

Another trick Katie tried to use to limit distractions from other kids around her while she was working was setting opened folders in front of her at the corners of her desk to sort of screen herself in, as had been suggested by another teacher a previous year.  This too was met with disapproval by her teacher, and she was not allowed to use them.  Here again, the poor girl is recognizing her need for a strategy and trying to problem solve for herself, and is met with (in her eyes) condemnation. 

What would have been the final straw, if I had heard of it before the last week or so of the school year was when Kate came home upset one day, reporting it had been the worst day of her life (not unusual that year).  When asked why, she became teary and told me she had been upset about something and was crying in class.  "But Mr Bush didn't even notice me or say anything!", she moaned.  "Finally, I just went up to him to tell him about it, but he just put up his hand (in a "talk-to-the-hand" type gesture) and said, 'Nope! Katie, nope, that's drama. Drama, drama, we're not gonna have drama now.  Go back to your seat.' "

Now, I understand that there are some attention seeking children who will and do create drama just to get adults' attention, and need boundaries set about when and how their issues will be addressed.  But that is not Katie.  When a child with identified special emotional needs comes to you crying, they need something from you. Their equilibrium is upset, and they need help to regulate themselves back to a balanced state.  Dismissing the child out of hand and telling her to go away with her messy emotions is about as far from what she needs as you can get.  

It was then that it became clear to me what her homeroom teacher's view of Katie and her needs was, and just what an oppressive environment she had been struggling in all year.  Here is the sort of person whose basic philosophy is that kids with struggles should "just toughen up and get over it".  "Quit being such a baby and just deal with it".  My God! Don't you think they would if they could?!  Do you think they enjoy going to pieces over seemingly little things in front of all their peers??! Do you have any idea how embarrassing it is for them to lose emotional control in front of everyone!? 

I found it interesting to note on her report card that in the columns marked 'Uses CARES skills'  (Cooperation, Assertion, Responsibility, Empathy, and Self-Control.) all of her other teachers said Katie did this consistently, while her homeroom teacher said only sometimes. Clearly, they were not well matched.  I still think about writing that teacher a letter to let him know how badly he dropped the ball with Katie. What a chance he had to make a real difference in her life at a really hard time, and how he'd missed it.  I had been so excited for her to have a male teacher for a strong male influence in her life, since her father is so uninvolved.  Having his support and encouragement could have given her such confidence and strength.  Instead, she got the same message I'm afraid she often get's at her Dad's house, "Quit being such a baby and just toughen up."

The Best Laid (504) Plans Gang Aft Agley

There was one more thing I wanted to implement to try to improve the school situation, but since it had taken so long to get the plan in place to start with, I didn't want to try to get it added as an official accommodation just yet.

At Kate's previous school each child was given a student planner in which to write down their daily homework, which the parent would then review and initial each day, keeping abreast of what homework was being completed, or not.  There was also space for notes back and forth between parents and teachers.  Kate's new school did not use these, but has a loose sheet called Peek-at-the-Week on which kids were meant to write their homework instead.  Well, the Peek being an individual, loose sheet, Katie inevitably lost/forgot it 99% of the time, so instead I bought a tough notebook with a folder inside to use in it's place.

I spoke with the coordinator and he approved its use, so the first day I sent it I wrote to her teachers:
In addition to the measures outlined in the 504 plan, I would appreciate it if we could use this notebook for regular communication about things for Katie.  I was told she would receive a wipe-off checklist for when she gets to her desk in the morning (re:  turning in finished homework, etc) and one for organizing at the end of the day.  So far she reports that she hasn't gotten anything like this.  Can you please check into that?

She has a hard time remembering to give me parent notes that are sent home, so please see that anything like that is put in the folder in here so I have one place to look for all communication.  
Enclosed there now is the signed copy of the 504 plan which she was supposed to turn in a week ago and I just found at the bottom of her backpack while writing this!
Please feel free to write any notes to me, or else please just initial & date so I know you saw this every day.  Thank you -

I thought this was a reasonable request and was hopeful it would open communication so I would have a better handle on how things were going each day.  The two main teachers endorsed its use the first day I sent it to school, but it was tough getting it worked into the routine.  Neither teacher had bothered to take the signed 504 plan out of the enclosed folder and pass it on to the services coordinator over the next two days and I had to write another note asking them to do so!  When Katie repeatedly brought it home unsigned I wasn't sure if she wasn't showing it to them each day, or they just weren't signing, so I wrote again, saying "If Katie doesn't show this notebook to you on her own PLEASE ASK FOR IT!"  One teacher began to use it fairly regularly, but her homeroom teacher rarely did.  A permission slip and check for a field trip sat in the folder for a week until I wrote another note asking them to check it every day.  One teacher included occasional little notes about behavior/emotional problems on some days, but her homeroom teacher only ever just initialed, so I wasn't kept aware of these issues in his class.

Slow Process

Two months later I’d still heard nothing. 

In the meantime I started my first FT job since I became a single parent, so it was a huge transition and I admit I didn’t stay on top of things very well.  Things with Katie went from not great to terrible without me there every afternoon when she got home from school to enforce our previous routines.

I called the student services coordinator back and asked about the status of the plan.  He told me he’d sent it home in Katie’s backpack!  Loose in the backpack of the kid with an identified problem of not bringing home papers!!  Without a phone call or email to give me a heads up!  And what happened to having another meeting where we discussed the services they could offer??

 He’d assumed the plan was in place and all going to fine, since he hadn’t heard any more from me!  Never mind the fact that it requires a parent signature to make it official and that he’d never gotten it back from me!  Ugh!  I was extremely unimpressed with the help this system was NOT providing!  I asked him to please send home another copy that day and I would look for it now that I knew it should be there.  He said I should read it over and let him know if I wanted anything changed, or sign and return it if not.  

Now, granted, I am not an expert in 504 plans by any means, but what I received seemed so simplistic and generic, I had a hard time imagining this was going to make a big difference.

The accommodations listed were:

- Special Ed busing                          At least they got the main issue that started it all!

- Preferential seating to avoid distraction.     Well sure, wouldn't teachers already be 

                                                                                           doing that for any ADHD kid? 

- Acknowledge positive behavior.                  Duh! Isn't that kind of a given?

- Provide space for student to calm down.

- Discuss changes to schdule ahead of time with student.

- Allow time at the end of the day to organize take home materials.

I spoke to the coordinator and reminded him that I'd asked if someone could check in with her at the beginning and end of the day to help her organize herself, but I didn't see anything like that included in this plan.  He said they'd discussed that and wondered if they couldn't start with giving Kate a wipe-off check list she could do at these times instead, and see if that would solve the problem.  I agreed to give it a shot, so they added:

 - Provide checklist to help keep student organized.

I signed the plan and returned it April 7th.  It had taken most of the school year to get a plan in place, but at least now that it existed I was assured it could be reworked in future and would follow her throughout her academic career as she moved up.

Requesting IEP evaluation/504 plan

I was not at all familiar with the protocol for requesting and IEP (Individualized Education Plan) evaluation or 504 plan when Katie's therapist suggested it in December (2013).  I decided to wait until after the winter break and discussed it with a couple other mothers I knew whose kids receive special ed services.  The girls' step-mother,  (or Bonus Mom, as they call her) Mary had been through this process with her elder son and encouraged me to push for a full IEP evaluation, even if we didn't really think Katie would qualify, just to be sure it was all covered and nothing was missed.

When school resumed I called and spoke with the Student Services Coordinator at Katie's school and requested such an evaluation.  He immediately tried to put me off by saying that at their school they really didn't like to jump right into full-on Special Education assessments (required for the IEP) right away, because it involves hours of testing and evaluation by a multidisciplinary team of staff.  Instead, it was really their policy to start with a 504 plan and see if the issues could be addressed that way before resorting to a full-blown SpEd assessment.  He did not actually refuse to do it, but I was very strongly persuaded that it was the way they usually did things, especially for problems as "minor" as Katie's.  

So I agreed to start with the 504 plan, just to get things rolling.  I really didn't understand (and still really don't) the difference between the 504 and IEP anyway (except that IEP services are much more comprehensive).  He told me they were in the middle of working on plans for a couple other students and could then meet with me to talk about Katie's needs.

A meeting was held Jan 21st between myself, the services coordinator, Katie's two primary teachers, and several other district specialists like the school counselor, psychologist, nurse etc.  They asked me to describe the struggles Katie was having and what I would like them to help her with at school, consulting with the teachers as we went to see what their perspective was.  

I told them how it had actually all started with a transportation issue, which they had been told had been addressed, and why the change which had been made was still unacceptable.  They agreed that walking around the pool was a bit too much to ask, and assured me they could get something else in place right away.

As to what else I was concerned about, it was hard to put into words exactly.  I did mention Kate's utter lack of organization, and did request that someone check in with her in the morning and before she left for the day to see that she had what she needed to get homework done and turned it back in when she brought it back.  Described how she can become perfectionistic and get upset when things aren't the way she wants them, needing time to calm herself down.  In the end they had me sign a bunch of releases so they could get documentation from her therapist, doctor and Alexander Center, and told me we would meet again in about 2 weeks to discuss what they felt they could offer to help.

Bus Stop Change ??

In the meantime, just before Christmas Break they did finally change Katie's bus stop.  She was reassigned to a door connected to our own building, but equally inaccessible and impractical for someone like Katie.  The new location required her to go down our hall and take stairs to the first floor, passing through 3 heavy fire doors to reach a locked door to the pool area, where she had to walk around the edge of the pool to another fire door on the opposite side and go all the way down another hall, through 2 more heavy fire doors. 

This certainly did not seem like a safe alternative to me!  To begin with, Katie still, a year later, has great difficulty opening the heavy fire doors separating hallways.  Secondly, the maze of blank hallways and doors this required her to navigate would have had her lost in no time if she tried it on her own, and walking around the edge of the pool every morning and afternoon!??!  Seriously?  I walked it with her for the last week before Winter Break, and I guess it was better than scraping windows to drive her 1/2 a mile, but honestly was this really the best the district could do?

Power Struggle Stand-Off

We are in the middle of being held hostage by my daughter's unreasonable behavior, and I HATE it!

Katie has had very little homework sent home so far this year, so we haven't had much chance to get into a regular routine for doing it.  Recently she has started to have occasional worksheets, but has been giving me a lot of hassle when it comes to actually sitting down and doing them.  We talked about this with her therapist last week and Kate said she was embarrassed and ashamed of herself to have me call her on it and promised to do better, understanding that she needs to get her work out of the way first thing before doing other activities at night.

But today she came home and immediately got resistant when I asked if she has homework.  I don't mind giving them a little bit of time to unwind when they first get home from school, so I told her she could watch one episode of one of her shows, but then it was time for work.  She has watched the show, but now refuses to take out the homework.  Threw herself on the floor, rolling around saying, "I won't, I won't" and getting herself all worked up.  

Then she tried to claim that Ms Katie had told her whenever she was feeling upset she could just play a game with me to help her calm down.  I told her that wasn't meant for this type of situation, but she has been laying on the floor refusing to work until I play a game.  I said I'd be happy to play a game when the homework is done, but not before.  We are at a stalemate, as she says she is happy to lay there on the floor until I play a game, and I clearly am not going to give in and play any games until the homework is done, if then.  

Just now she ramped up the tantrum even more, screaming so she can't even hear the instructions I'm trying to give her.  So I yelled once, to get her attention and tell her to listen to what I'm saying, but now she is screaming and carrying on that she's scared of me because I yelled.  I am at my wit's and and want to pull my hair out, or thrash her within an inch of her life, so I said she needed to go to her room and be away from me right now.  She's currently in the bedroom screaming about how much I hate her and no one cares about her.  I hate this kind of situation when there is nothing I can do, just feeling hostage to my own child.

Impulsive Aggression

Katie came running to me off the bus yesterday crying so hard I almost couldn't understand her.  "I just didn't think!  I don't know what's happening to me!  I didn't control myself!", was what I could make out.  I hugged her and told her it would be ok and we'd talk about it when we got home.  

I sat her down, told her I wouldn't be angry and asked her to start from the beginning and tell me what happened.  Apparently there was a video the class would be able to watch if everyone was finished with their work in time.  The boy next to her was bothering/distracting Katie to the point that she finally grabbed his hand and bent his wrist back, scraping her nails across the back of it.  

She was SO upset with herself! She couldn't believe she had done it, but admitted it wasn't really an accident, she just got so frustrated!  She said she didn't know what was happening to her and she didn't think she deserved anything good.  She said the boy didn't even tell on her, she told on herself.  The teacher said he would have to write it up and she was terrified of what that would mean.  "I've never been written up for anything in my life!!", she wailed.  

Katie has never physically acted out in anger or frustration with anyone like this before, so I decided to talk to her doctor and see what she thought about it.  As it happened we were able to get in to see the pediatrician right away today and decided to up the dose of her Concerta to help with the frustration tolerance, distraction and impulsivity as the old dose doesn't seem to be cutting it this year.  We had a short conference with her teacher this afternoon too where I was able to explain her SPD and anxiety issues and he seems very willing to work on whatever she needs.

Starting Therapy

Just before the end of the school year last spring I got Katie started seeing a child therapist at Nystrom & Associates right here near us.  Her therapist's name also happens to be Katie (actually part of what helped me decide to choose her!), so she is known as Miss Katie in our house.  At first it was hard to explain exactly what is was I was bringing Kate there to work on.  She doesn't have the sort of meltdowns we used to have so frequently anymore.  But with all that has been going on, all the change and restrictions with living with Grandma, I thought it would be good for Katie to have someone to process it all with.  We also saw her pediatrician and got her Prozac dosage raised to 20 mg/daily since everything in our world seemed so up in the air and unsettled and there have been a lot of adjustments to go through.  

Katie likes visiting Miss Katie, especially because she is sometimes allowed to draw on her large windows with special markers! (Kate is quite the little artist!!)  At first Katie was doing a lot of complaining about things that go on at her dad's house and why she did not like going up there for his weekends.  That was hard for me to hear because there is really nothing I can do about any of that.  A change in Rob's work schedule at the beginning of the summer made some changes that I think have made things better for her now, and Rob and Mary were good enough to come down and meet with Miss Katie and Kate to talk about some of her concerns, so at least she got to feel like she was heard.

We're working on Katie taking control of her reactions when she has negative feelings, learning how to calm her body down and not over react.  She has admitted that she doesn't have the fits of temper at Rob's house that she does at mine occasionally, so we are trying to explore why that is and what we can do about it.  (My personal opinion is that she is too intimidated by Rob and Mary to misbehave around them and holds herself together out of pure fear.)  I do admit that my consistency in following through with discipline hasn't been as strong as it should be. She definitely has a knack for wearing me down, so it is a learning experience for us both.

Heavy Changes

2013 has been year of very big, very stressful changes for our family.  I had finished the last of the classes for my Master's last fall.  No more classes = no more student loans.  Since the loans had been paying the rent til then, I immediately started looking for a job that would pay the rent instead.  I never dreamed I would have such a hard time finding something, anything. 

I did some temp work and sought what help I could find, but when it came time for the lease to be renewed, the management declined its renewal, as I had no reliable income.  It was an extremely heavy blow.  I had worked so hard at holding things together and was praying every day that this would be the day I would finally get a call about one of the hundreds of jobs I'd applied for, but it didn't happen.

My lease ran out at the end of March and we had no choice but to move in with my mother in her apartment in New Brighton.  Not ideal by any means, as it's only a 2 bedroom apt, but better than the alternative.  Rob wanted the girls to come and live with them until I got a job and got resettled somewhere, but I just couldn't turn their entire lives upside down like that. I know that they love them and have the best intentions, but they are just not attuned to Katie's special needs in the same way.

I drove them to their schools every day so they wouldn't have to change school with only 2 months left of the year. Originally I imagined we'd be here only a couple months.  Certainly I would get a job any day and we would be able to be back into a new place of our own by the start of the school year. But things did not work out that way.  We are still here. And it's tough.  The toughest time yet, to be honest.  I've never felt so defeated and useless. 

I spend several hours a day several days a week applying for anything and everything I think I could be qualified for.  I'm not being picky- Cub, Target, Wal-Mart, anything would be fine at this point if it gets us back into our own place.  I've had a bunch of interviews, probably one a month at least, a couple I felt really good about too, but none have panned out.  Was called back for a 2nd interview at one place last week and got excited, but it's been a week now without any word, so I'm afraid that probably means they've chosen someone else.  Heart quickens every time the phone rings. 

Bitter Disappointment

Katie's class is taking a field trip to Como zoo on the last day of school and she begged me to sign up to be a chaperone.  She was so psyched to have me coming with her class and couldn't wait to show me to her friends. But today Melanie brought home a paper inviting me to the 5th Grade Graduation at school on the same date and time.  Obviously the graduation is a big deal for Mel, so I will definitely be there, and that means no zoo.  Just broke the news to Katie and she absolutely lost it.  Threw herself on the floor, writhing in agony/hysteria.  "NO! NO! This can't be happening! This can't be happening to me! I'm gonna die! I just wanna die!!" and such.  Poor Melanie burst into tears and fled to her room to get away from Katie's screaming.  I left Kate rolling on the floor and went to comfort Melanie.  She was hurt that Katie always seems to have things her way and doesn't care about anything that's important to Melanie.   Hurt that there should even be any question of my not attending her graduation.  She definitely gets the short end of the stick a lot of the time when we have to cater to Kate's needs and she is such a trooper for dealing with it as well as she does.  I let her know there was no way I'd miss her graduation and that I am very proud of her.

First Twins Game

Melanie's All-District Choir was singing the national Anthem at the Twins game tonight.  Quite an honor! This was the first Twins game for both of my girls, and my first time at the new stadium.  Kate was over-the-moon excited!  We had seats directly behind home plate, but very high up, and she was very nervous about walking up the steep steps to get to them. We both felt a bit dizzy at first being up so high, and looking down so far, so steeply. 

She thoroughly enjoyed the first 4 innings, but then started to get whiny.  She really wanted me to buy her a hat, but they are crazy expensive there and I said no, so she fussed and pouted.  Then she realized that the cameras showing people in the stands didn't seem to be showing people way up at  the top, so she wouldn't be able to be on TV, and that was the last straw.  She declared that this was not as fun as she thought it was going to be and she was sooo disappointed, and the only thing that could stop her crying would be a hat or being on TV.  She was "sooo bored", but absolutely did not want to leave early. We held in through the 7th inning and then left to get ahead of the crowds.  

She griped and groaned all the way to the car and fussed and cried all the way home, talking about how she always has such "bad luck", that her friends give her "bad luck" and nothing she does ever turns out good, and it never will.  She feels her "senses" make it too hard for her to go to school and she just wishes she could be "normal".  

She looks at the other kids and wonders what it's like to be "normal" like them.  My mom was with us and told her she needed to start thinking positively and not be determined to be miserable, but Katie only grunted at her.  SO, frustrating and exhausting to spend a big, special night trying to have a good time together, which she really did for a while, only to have her weep and moan later that it was not good enough.  I know it was partially because she was so over tired, but it's still hard to listen to her agrue that everything is awful and nothing can make it any better.

Awfully sick, awfully unhappy girl.  Kate's got a rotten cold (or is it allergies?) and is feeling miserable today.  We were supposed to go to a movie this afternoon, but she is so weepy and moany-groany that we are gonna have to wait for another day, which of course is causing even more tears.

Oh my goodness!  I am completely wrung out and in the depths of despair.  Single parenting is awful and I am ready to throw in the towel. Can't stop crying. Thank GOD it's Rob's weekend!

Kate came home from school and immediately lost her mind over having to go to Dad's for the weekend.  She still hasn't gotten over the fact that they were with him 3 weekends in a row because of Easter and felt it was "not fair" that they only had one weekend home with me again.  She threw herself on the floor and began screaming that she was not getting in the car, but then did come when Melanie and I went to leave.  She got in crying and started screaming that she was "not going to get out of this car" when we got there.  She was crying and blubbering hysterically, and I felt I needed the mental break more than ever!  

Kate was determined to cry/scream the whole way there, though I warned she was going to end up with a sore throat.  There didn't seem to be anything I could do, because if I stopped she'd be getting her way, and I really needed to get away from her for a while.  Figured I just needed to try to ignore her to show her she can't manipulate me with her tantrums, but that was really tough.  I turned up the radio, but could hardly hear over her noise.  Eventually I decided to call Rob and let her talk to him.  I got his voice mail and don't know if he could even hear the message I left over her screaming in the background, but he called back before long and I made her talk to him.  I wanted him to hear from her himself the things she complains to me about about being at his house.  By now I was in tears as well, so extremely frustrated and feeling so helpless, and then Melanie broke down too because I was crying and she didn't want to listen to Katie's tantrum all the way there. We got to Elk River before she finally stopped.

After she talked to Rob she continued to fuss for a while, but then fell asleep, having exhausted herself.  But I was so overwhelmed and exhausted I couldn't stop crying from time to time.  She woke up as we passed Princeton and started right in again with how unfair it was and how mean everyone is to her, etc., etc.  I dropped them at the house, where she clung to me and begged me not to leave.  Then I went a couple blocks away to where Rob was working to talk to him about it all.  

I walked up to him crying and sunk my head on his chest, just wanting a moment of understanding and support, an arm around my shoulders telling me it's gonna be ok, we are supposed to be partners in this after all, but he wouldn't touch me.  I continued to cry as I told him about all we'd been going through this school year and especially the last month or so, and finally about getting her started on meds yesterday.  His step-son has struggled with ADHD as well, so he's actually pretty familiar with working on finding the right dose of meds and the emotional upheaval of getting used to new meds, etc.  So at least he'll take the situation seriously.

I drove home feeling absolutely alone and overwhelmed. Still crying and utterly exhausted.  I know this may sound kind of harsh of me to "ignore" her distress and force her to go when she clearly didn't want to, but I NEEDED to get away from her for that time.  I actually spanked her last night when she was throwing a fit (and then immediately felt worse and apologized) but I was just that close to the edge and really could not handle it anymore.  Please God help things level out next week!

Rough start

Well, Kate's first day on meds was not the miracle she had hoped for.  She came home and frumped on the couch and wouldn't answer me about how the day went.  "I don't want to tell you!", was all she would say, getting teary.  I set aside what I was doing to talk with her more directly and find out why she was upset.  "I never wanna talk about it! I don't wanna tell you!"  Well, if that doesn't send up red flags...  If she's getting that upset I really need to know what happened!  "I don't wanna say anything. I'm gonna get grounded and you're gonna talk to me for a long time about it!"  Ok, so she thinks she's in trouble, but I can't imagine her ever doing anything too terrible. 

Eventually, with much drama and tears she eventually told me.  One of the girls in her class is frequently bossy to her, and Katie told her that she acts like she's the queen of the school.  This caused the little girl to cry, which got the teacher's attention, who came over to speak to them, which caused Katie to cry as well, and she was horribly embarrassed.

Poor Kate, so worried about something so innocent.  She was completely overwrought and took a long time to settle down even after I told her I was not mad at her.  I told her it is ok to stand up for herself as long as she does it nicely and I knew she hadn't meant to make the other girl cry.  She did say that she felt like the pill had helped her, "but then it all got ruined".

Rocket Math Blues

Katie is feeling really down on herself lately over "Rocket Math", a timed drill with approximately 20-25 addition &/or subtraction problems they are given a minute to complete.  Apparently there are different levels, when you can complete sheet A in one minute, you move up to sheet B, then C, and so on.  Katie came home crying because she is still on sheet A, and most of her friends are nearing the end of the alphabet.  She knows the answers, she just cannot complete it within that one minute, so she's been stuck at that first level all year.  Poor Luv!  She feels really stupid and is embarrassed  to have her friends know what level she is on.  She says she never wants to go to school again.  I need to be looking into the best place to get her some further evaluation.

Parent Teacher Conferences

Uh oh, not so good this time.  Both girls had less than stellar reports this time through, and both for the same reason, lack of focus and organization.  Katie's reading at a 2nd grade level, top in her class, and consistently proves that she knows how to do all of her work, and gets the right answers, when tested one-on-one with the teacher, but cannot seem to get anything done during regular class time. She is far too distracted by everything going on around her.  She gets through about 1/4 to 1/3 of a worksheet in the time it takes the rest of the class to finish, then forgets to bring the work home to finish, or refuses to do it when she does bring it home!  Or if she does get something done at home, it sits in her folder and she forgets to hand it in! 

I don't know whether this is straight ADD, which definitely runs in our family, or if it's the sensory over-stimulation causing the problem.  Think of how difficult it would be to work on a timed math quiz when you are hearing the buzz of the lights above you, feeling the tag in your shirt and the seams in your socks, having to concentrate on the weight of the pencil in your hand and the correct amount of pressure to use to write with it and not break it.  She cannot tune out the extraneous information her body is perceiving the way most of us do.  It is so hard to see her struggle like this.

Insurance Frustration

Got a letter from the OT clinic today saying they received a denial from the insurance company for more OT services for Katie.  SPD does not have the same sort of recognition as other issues, so all the insurance looks at is the physical issues (delay in motor skill development), and Katie did too well to meet their standards for needing care.  Ugh.  Now to find somewhere else to get some help...

Whoa! Flashback

Had an episode this afternoon that felt like we were right back to where we were two years ago.  Katie came home from school and immediately demanded that I put on a particular DVD.  The show I was watching was not quite over, so I told her it would be her turn in 10 minutes.  She was not happy with that answer and began fussing and yelling at me, so she was escorted to her room (not very gently I'm afraid, I admit I got mad in a hurry).  She continued to scream and carry on while I watched the remainder of my show.  I wanted to just leave her to work it out and settle herself down, but I could hear things crashing and being thrown, so I went in to try to talk to her and keep her from doing any actual damage. 

I went in and sat down without saying anything to her.  She glowered at me and made a show of tearing up a piece of paper and throwing the tiny bits as far as she could, then picked up some toys and started throwing them around.  OT taught us that deep pressure touch and joint compressions can help to calm her body down and reset the switch, so to speak, on her level of arousal.  I told Katie it was not ok to throw things in her room, that she needed to control her body, and that I would help her if she was unable to do it on her own.  When she chose to continue throwing things and yelling at me, I took her into my lap and held her in sort of a bear hug to provide some of that calming pressure. 

She cried and threatened to do every naughty thing she could think of, "I am never going to settle down!"  "I am going to break all my crayons in little pieces all over the room!"  "I am never brushing my teeth again!" etc, etc. and I just held her silently.  I told her I would talk to her when she was under control, and then just waited, all the time wondering if I was doing the right thing.

This hug was meant to provide that deep pressure and joint compression, but I know there have also been times and places when it can be argued that a restraining hold on a child can be abusive.  That certainly wasn't my intention, I just really wanted to calm her overwrought system. There are autism spectrum kids who are rolled up in mats, or pressed with large pillows as part of their OT, and Temple Grandin's squeeze machine was created for this very purpose, so I thought this should be ok.

I don't even remember how she eventually wound down.  I tried to get her to try some deep breathing with me, but it only made her mad and she says she can't do it when I'm trying to show her how, that I should leave the room and let her do it by herself.  The storm was calmed enough by then that I agreed to do that.  The whole thing had lasted half an hour. 

I left the room exhausted and discouraged that we were back to having those kind of melt downs again.  I had thought we were doing better.  Disappointed with the way I'd handled the whole thing, feeling like I should be able to manage this better by now, that I should have been able to calm it down faster. I still have so much to learn.

Swimmin' Like A Fish

Another huge improvement this summer is Katie's confidence in swimming.  My mother has a pool at her apartment and the girls have gone swimming with her a few times without me, and suddenly almost all of Kate's clinging anxiety in the water is gone!  She like to wear arm floaties, but says she doesn't need the swim vests anymore.  In Grandma's pool she will swim the entire length down to the 6' mark and back (of course I always stay close when she goes that deep).  She has been attempting to float on her back, though that is still pretty scary when her head actually hits the water, but she tries!  For the past several years she has always insisted that I actually hold her whenever we were in the water, or that she at least hold onto one of my arms the whole time. 

Last time we were at Grandma's pool with all the cousins I was bouncing Kate up in the air a little, in and out of the water, when I accidentally threw her a little too high and she went under when she came back down (though only for a second, as I pulled her right back up).  It startled her, of course, but she didn't freak out or cry as she surely would have before.  She was actually pretty proud of it and wanted to know if everyone had seen it!  She nervously allowed me to do it two more times to show Grandma and an Aunt.

Our apartment complex has a pool as well and this summer is the first I've been able to take the girls and let them play in it without having to be in it with them.  They both stay safely in the 3' end and just sort of bob around. Katie is even willing to forgo the floaties in our pool now and is very proud of being able to walk around all on her own,  especially since big sister Melanie refuses to.  It is so nice to be able to just supervise their water play without having to be Katie's anchor the whole time anymore!