Letters + The First Day

The Roc and I skipped the chaos of the elementary school open house at the end of August, and opted instead to schedule a private time for him to see his new fourth grade classroom and to meet the new autism teacher.  This private meeting is something we’ve done since he started school, and I am always relieved that everyone is willing to accommodate him in this way.  The morning of our meeting, while he played in my big bathtub, I sat on the floor and asked him questions about school, what he liked and disliked and if there was anything he wanted the new teachers to know before school started.  I also tried to get him to tell me what things the teachers could do to help him if he was having a hard time, but he couldn’t tell me.  I took notes and used them to type up a letter.  I read it to him and he approved (mostly to get me to stop talking about school I suspect.)

Here are the Roc’s words, (except the first two sentences which I added) his first foray into self advocacy:

Dear Teachers,

My name is the Roc and I am in your class this year.  I want you to know a little about me.  I have autism and sometimes it is hard for me to stay calm.  I feel nervous about school when I don’t know to expect.  I don’t know the kids in my class.  I am also nervous about what will happen during the day (my schedule) and I like to know what comes next.  I am worried about what to do at recess and who will play with me. 

I hope I have a teacher helper again this year.  I need help and they help me in the classroom.  Then I don’t have to wait for the teacher who has to help everyone else.

I am good at recess and running.  I also like gym.  Daily 5 isn’t my favorite.  Reading and math are hard for me and I always have to do work.  Work is hard and I get frustrated.

Roc

***

Yesterday I followed that letter up with an email to the people who work with the Roc everyday at school:

Hello Team Roc!

With the new school year starting tomorrow I thought I would send you all a little note about how the Roc is doing since school let out in May and what we have been working on this summer.  I thought this would be good for those of you who have never worked with the Roc before.  🙂

We believe that the Roc’s success is a team effort and we are always available to answer any questions and we hope to communicate with you all as the year goes on.  We take our responsibility as part of this team very seriously and will gladly take any suggestions you have in regards to helping the Roc grow academically, socially and emotionally.

The Roc has had a good summer and went to a few weeks of ESY before we headed to SC to visit family for the month of July, he also participated in a day camp through True Friends as well as a 4 day social skills camp at the end of August.

As evidenced in the letter he gave to Mrs. fourth grade and Ms. autism teacher when we had our private “open house,” the Roc knows that he is autistic and he knows that he has a harder time staying calm than other kids.  He has expressed this summer that he doesn’t like that he is different and he wishes his brain worked like everyone else.  We are working hard to build his self esteem and show him that he is so much more than autism.  We want him to like himself and be happy with who he is.

The Roc is still having a hard time with mimicking other children to get a reaction.  He displayed this behavior with his cousins this summer and also during day camp.  We have been talking a lot about other people’s feelings and I recently bought a self-control & empathy workbook to do with Rocco.  Just a heads up that this is still an issue.
The Roc has been obsessing over spiderwebs for awhile and it has gotten so bad that he won’t eat if he sees one (my house is very clean now.)  I do not know if he will talk about this at school, but if you see him scanning the ceiling and all the nooks and crannies of a room–he is probably searching for spiderwebs.  I welcome any suggestions anyone may have in how we can help him overcome his spiderweb issue.
The Roc has been twisting up the left side of his shirts for many months now.  I bought a bunch of hand fidgets and while he does like to have something in his hands, he still twists up his shirt.  We are not calling attention to it anymore as he was getting very upset when we talked about it too much.
The Roc loves, loves, loves plants vs. zombies on his iPad.  He probably won’t talk about it at school because he said, “zombies aren’t appropriate for school and I don’t want to get an FYI.”    He has made up his own zombie game at home which he calls nerf gun vs. zombies.  We use a behavior chart at home that is plants vs. zombies themed and he earns tokens for positive behaviors and we take tokens away for offenses.
The Roc loves a good joke and is starting to be able to tell when people are joking with him. He loves to tell jokes, but needs a little work on coming up with them on his own.  🙂  (C told him to think of a few things that would help him have a good week this week and jokes came up.)  He doesn’t quite understand when people laugh because he said something funny when he didn’t mean to.
The Roc has a hard time looking people in the eye and he has told me it is because he doesn’t know what they are thinking.  I have told him he can look at someone’s forehead instead of their eyeballs if this makes him more comfortable.
Please know that we are always available to answer any questions or concerns you may have and we love to hear when you notice progress in the Roc. Feel free to pass this along to anyone else who works with the Roc.
Good luck tomorrow!
***

Last night the Roc freaked out a bit at bedtime (understatement) and even though he said he was mad because I let him play the iPad too long (I did) and I’m not tough enough to make him stop (Yesterday I wasn’t.  Hello end of summer, hanging on by my fingernails, whatever works) I also knew it was because school is starting back up.  I was proved right when he started to scream, “I hate my life!  I don’t want to go to stupid school!  It’s boring!” when I told him to get his pjs on and teeth brushed because he had to get some sleep before school.  Bedtime turned into an hour long cool down session with the white board.  I wrote what was making him angry: Plants vs. Zombies 2, the dog staring at him, and his clothes not going where he wanted them to when he tried to fling them from the second floor down into the family room.  Then I wrote some solutions/options to what was making him angry:  Stop playing the game forever, or for a few days, take a break, take a deep breath, call up the inventors of Plants vs. Zombies 2 and tell them they are greedy, stupid heads who made the game way too hard.  I wrote more silly stuff for the dog staring and clothes flinging issues and was delighted when he burst out laughing.  We eventually wrote out his morning schedule and I drew a map at the bottom of how to get to his classroom.  He didn’t want to talk about school, only asking if he would still ride the van instead of the bus.

***

It wasn’t as hard to get him up and out the door as I thought it would be this morning.  He did what he usually does on school days and dragged his feet through the morning routine causing him to run out of time to read (I read to him, either books from the library or Harry Potter) before the BUS came.  Oh my, it was a bus and not the van!  It’s been a van for three years!  The only thing he asked me the night before school started was if the van was going to pick him up and I hurriedly said, “Yup, of course!  You don’t ride the big bus, you ride the van.”  The look he gave me when a big bus stopped at the end of our driveway was of pure and utter shock.  He was speechless.  Lucky for him the bus driver seems super, duper nice and he asked me a bunch of questions while the bus aide (an aide on the bus!  Yay!) showed him to his seat.

I got an email during the day from Mrs. fourth grade saying that he was doing great in her room and was “delightful,” as well as thanking me for the earlier email with all the info on the Roc, that it helped her immensely.  I also got an email from Ms. autism teacher this evening stating that the Roc had a wonderful day, was a lot of fun, was nice to a younger student in her room, and only had one hiccup which involved him not being able to take another student’s perspective when they were upset.  I was glad to get these emails as the Roc would only tell me that he had fun at recess and then all he wanted to talk about for the rest of the evening was Halloween, plants vs. zombies, and what we could bake next (we bake together every week.)

We we made it!  First day of fourth grade over and done!

Obligatory first day of school pic:

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Good News Call

So often we hear the negative about our kids.  We hear about all they cannot do after their evaluations, how far behind they are at conferences, what they have to work on during IEP meetings.  It’s hard to hear these things, to read the reports full of these details, to craft the goals we hope will help them shorten the gap.  Our hearts are pricked to read and hear our children dismantled in this way, because they are so much more than the sum of the things they need to work on.  So much more.

To combat all the negative we celebrate the positive.  No matter how small, every step of progress is noticed.  We know our children better than anyone, and we know where they started, we know the hours they (and we) have put into the skills they have acquired.  And we often deal with the fall out of how hard they have to work every single day.

The Roc works hard at school.  He works hard to keep himself together all day, to be in the classroom and be a part of it.  He works hard to be around his peers, to be socially appropriate.  He works hard against his anxiety and the sensory onslaught that is the elementary school.  And he does.  He is mainstreamed in a first grade classroom, with para support, most of the day.  He goes to the “resource room” for the second half of reading and math, to get more direct instruction.  There is friendship group once a week and a social skills group once a week.  It’s not easy for him.  But he’s doing it.

The academics are coming along.  Math is clicking for him, his writing is clearer, but he is behind in reading.  We work everyday on his sight words, to keep the kindergarten words and add the new 1st grade words every week.  When we work on his spelling words I hear him sounding them out, I know the information is there.  At conferences we were told he is at “beginning kindergarten” in terms of his reading ability.  I swallowed those bulging words and  tried hard to lift my sinking stomach, a whole year behind, a little voice whispered in my ear.

Last week as I was leaving the school after volunteering the Roc’s special ed teacher, Ms. G, and I saw each other in the hallway.  We stopped and chatted a bit and she very excitedly described how the Roc read a couple little sight words books to her that morning.  Books that he hadn’t read in a while, but could read at one time.  At first he said he couldn’t do it, and after her prompt he started to read.  He even self corrected when he made a mistake, and then went back and reread the sentence.  I grinned when I told her that I started to write her an email that morning, because he finally started to read those little books to me the night before.  She has been sending a couple home every few weeks as he mastered them, but he would never read them to me, until now.

It was so nice to see her, to connect for a few minutes face to face, and to hear her joy at his progress.  I love that she sees the positive and that she shares it with me.

Then on Friday when I got home from running an errand there was a message from Ms. G.  I will admit to my heart kicking when I first heard her voice, one of the last times she called me it was to warn me that the Roc had not had a good afternoon.  But it was a “good news call,” and I don’t know if all teachers do this periodically or if it is something just she does, either way, it’s wonderful to hear the positive and to know that she is celebrating it just as much as we do.

Her message:

Hi there, it’s Ms. G calling with a good news phone call for the Roc.  He has done an awesome job this morning.  He did his sight word test with me for his first grade sight words from Mrs. H and got 36 out of 55 and breezed through them which was so amazing to see.  Then, he is bringing 3 books home today.  He even went and read one to Mr. H (assistant Principal) to show off which was a huge step because he was super nervous to do it.  He got down there, walked in and he read the book!  When we walked out he said “that was really fun, can I do it again?”  So that was pretty awesome.

I just wanted to call and tell you he was doing a great job and to have a great weekend!

All of that is pretty awesome.

But what is really awesome is that she shared it with us.  That she took the time to call me and let me know that he willingly read his sight words, and that she had him go down and read a book to the assistant Principal!   What a confidence booster for him!  What a great idea!

When I asked the Roc about it he grinned and said, ” I did!  I read a book to Mr. H even though I was nervous!  I did a good job!”

It makes me smile every time I think about it.  I’m happy to send him off to school knowing that he is being seen for more than just the deficits.  The progress is also celebrated.  That means more to me than words can describe.

1st Day of 1st Grade

The Roc started 1st grade two weeks ago, and again I did a little hop as I closed the door on another summer.  It may sound callous, mean spirited, or even that I am not a very good mother to want my son to go back to school, for us to have some time apart…but it’s the truth.  There it is, and I’m willing to own that truth.

So much so that I had to giggle at all the facebook statuses I saw leading up to the first day of school.  Back in Delaware school starts earlier than here in Minnesota, so I was seeing some of my mom friends writing about shedding a few tears as the the bus pulled away, or even how a few of them followed said bus to school and then cried the whole way home.  I read through some of the comments left on one mom’s status,

“Aw, sending you love… It’s hard, I was there last year. Big hugs.”

“Aw, you’re such a great mom. I still tear up too no matter what age the kids get.”

” The 1rst & the last were the absolute hardest for me..but I cried with every one.”

” I sobbed as my baby girl left too…it goes by so fast!!!”

” ‎:-( I feel your pain…hang in there mama!!”

“I did the same thing with my youngest…cried all day!”

and I had to leave a comment of my own, which apparently resonated with no one on her friends list,

” I guess I’m in the minority. I did a happy jig when Roc went to K! Lol. (but he rode the bus to prek so that’s when I was a twisted up.)”

In actuality I was all twisted up when I left him in his special ed preschool class for the first time when he was 3.5 years old, not when he eventually rode the bus to preschool later that same year.  I cried so hard I could hardly see the parking lot and get to my car.  I did cry the whole way home that day.  But not because my baby was going to school, but because he was going to a special preschool because he has autism.  I worked and worked to get him evaluated and into school where he would get some help as soon as I figured out he was on the spectrum.  When I finally dropped him off for his first 2.5 hours of special preschool I felt shredded.  No one but a special needs parent really knows how that feels.

So I welcomed the start of school with joy this year.  We had such an eventful summer, so full of big life changes that we needed to get some balance back.  Because we need our routine.  He needs his routine.  And he needs his services to start back up, speech, occupational therapy, friendship group, and social skills group.  He needs to be around other children.  He needs more people working with him, challenging him, to keep him stretching and growing.

I was also looking forward to seeing how this first year would play out at this new school, with all new (to us) teachers and administrators.  I worked hard to get a good program set up for the Roc in Delaware and so I was nervous going to our first official IEP meeting a week before school started here in Minnesota.  I was pleasantly surprised at how nicely that meeting went, we still tape recorded it, I still wore my IEP outfit, I still came with my big binders of information about the Roc, and my notebook of questions, concerns, and points that were really important to me, but it went better than I had anticipated.

They didn’t try to remove any of the services we had upp’d in Delaware and the special ed teacher had already worked in a “motor break” for the Roc that would happen each day after he’d been in school 2 hours.  The social skills group would actually be a social skills group in this school as opposed to just the Roc and the school social worker, as it was in Delaware last year, because he was the only one who had the educational label of autism in his kindergarten center, therefore he was the only one eligible for the social skills group.  The friendship group is something separate from the social skills group, and again, new to us this year.  When I raised concerns about how chaotic recess and lunch would be for the Roc, they had a suggestion right away – that the Roc would get to leave recess a few minutes early, head into the cafeteria with a couple other children, find his lunch bag, and get started at his table.  Again, before lunch is over, the Roc is allowed to leave a few minutes early with a few other children (who presumably cannot handle the chaos of the whole 1st grade leaving lunch at.the.same.time) and head to a story time.  I was impressed by all the teachers who will be working with the Roc and how excited they were to get him this year.  We left the meeting feeling cautiously optimistic.

The Roc and I skipped the craziness that is open house and instead went to the school at an alternate time so he could see his locker, his classroom, put his stuff in his desk, and meet all of his new teachers and therapists.  He was able to tell them that he would be anxious on the first day and articulate that he was worried he wouldn’t know where his classroom was.  The special ed teacher immediately came up with a solution and made him a tag that said his name, grade, and teacher, and we put it on his backpack so if he was lost and tongue-tied, he would be pointed in the right direction.  The Roc was able to see exactly where the van would drop him off and where he was supposed to go from there.  The teacher also printed out a sheet with all of his teachers and therapists pictures and names on it and we went over that in the days leading up to the first day.

When the big day finally arrived the Roc was excited, and he got out of bed willingly to get ready.  He was bathed and fed with time to spare and so we waited by the front door with the sheet of teacher photographs right beside him.

After he had been waiting for a little while, his anxiety got the best of him and he got really silly on the front stoop, jumping, waving his arms around, and letting out some repetitive yells.

He did pose for one more photo before the van came.

And when the van drove out of sight I exhaled into our foyer and grabbed the leash, ready to take the dog for a nice long walk, alone.

About and hour later I got an email from the special ed teacher, complete with a couple photographs of the Roc in school.  He was doing fine, following directions, still smiling.

I relaxed.

 

A Meeting 8 Months in the Making

I’ve been keeping my mouth shut for awhile, but now I can open it and write about a meeting I worked EIGHT months for.  To change the Roc’s educational label from emotionally disturbed to autism.

Back in January I decided that I couldn’t live with that completely unjust label attached to my boy and I deeply regretted that I allowed it to happen.  Since he wasn’t a behavior problem in class, which was the reason I was given qualified him for the ED label in the first place, I called the schools spec ed coordinator to find out how to start the process to change the label.  We had a brief discussion on the phone, she agreed to look into the matter and talk to the school psych who pushed the ED label, and then she sent me a copy of the Delaware regulations.  After 3 weeks of hearing nothing, and under the advice of a friend, I sent a certified letter to the district supervisor of special education and cc’d the school psych requesting an independent educational evaluation.  I immediately got a phone call.  And so began the back and forth emails with the district supervisor of special education.  After a volley of 32 emails, taking up most of the month of March, she approved the neuropsych, and the speech and occupational therapists I had requested.  I scheduled the evaluations for May, the first available appointments.  The neuropsych evaluation consisted of a parent interview (the ADI-R), a school observation, and then 3 consecutive days of testing, the ADOS being one of many tests administered.  Both the speech and occupational therapy evaluations were equally comprehensive.

We got the results of all three evaluations in June.

Guess what?

The ADI-R and the ADOS concluded that the Roc has AUTISM.  Imagine that! Guess the neurologist, the developmental pediatrician, the psychologist at the children’s hospital, and the mama who knows her kid were RIGHT! The neuropsych had great recommendations and lots of information on where the Roc struggles the most, and really emphasized that his struggles are due to autism and language impairments and that he is NOT emotionally disturbed.

The OT and speech evaluations were full of awesome in-depth information on the Roc.  I sat for hours upon hours reading all the reports and taking notes.  I learned so much about the body reading the occupational therapy evaluation and was stunned to see in black and white, how dysregulated my boy is.  His auditory sensitives are huge.  He has gross motor issues that impact is ability to even attempt the fine motor tasks that are demanded of him every day.  The occupational therapist was mad when she heard that the Roc had been labeled emotionally disturbed.  She said he was clearly a boy who needed to be taught by people who understood that the behaviors he exhibits are due to sensory issues and how best to diffuse them and prevent them.

We scheduled an IEP meeting for July to go over the IEEs and I also mentioned that I wanted to discuss placement again.  We were all agreed on the Roc repeating kindergarten, but I was still doubting moving him to classroom with less support, and reading the neuropsych report furthered my feelings that he needed to be in a well supported classroom.  Then they canceled the meeting saying that since we had done the ADI-R and the ADOS the district autism assessment team needed to review the reports and view the Roc during summer school.  We rescheduled the meeting for the end of August.

Last week was the meeting, and I was well prepared.  I had a friend on one side, GC on the other, the neuropsych on conference call, and a voice recorder on the table.  I had prepared a long document supporting the autism label and I didn’t even need to reference it.  They agreed.  His label was changed to autism.  Whew.  8 months.  Many phones calls.  Gobs of emails.  Lots of time.  School missed for the evaluations.  Notes taken and discussed.  For an educational label.  A label to fit the diagnosis he has.

A wrong was righted.

But so much more than the appropriate label came out of these evaluations.  After everyone on the team agreed to the new educational label of autism, (and I laughed when we went around the table and I had the chance to say “I’ve never said it wasn’t autism, I presented my child to the school when he was 3 years old, telling you that he has autism,”)  we talked more about placement for this school year.  And after arguing with a school psych (who had never met my son, only read this one report about him before coming to the meeting) about retaining the Roc in kindergarten (a team decision made in May,) and having the neuropsych state again that moving him to a less supported kindergarten placement wouldn’t be to his benefit, we were presented with the option of having him repeat kindergarten in the very same classroom he was in last year.  20 students total, 5 identified with a need (the Roc making that number 6), a teacher, special ed teacher, and a para (who used to be a speech therapist) all full time in the room.  We agreed.  With the hope that a familiar environment with adequate support and some revised accommodations will allow the Roc to flourish this year.

Then the school occupational therapist presented her findings from the independent OT report.  She had prepared a document titled “sensory strategies for the Roc” and I knew I was going to like what she was about to say when I read that title.  She took almost all of the recommendations that the independent evaluator suggested and incorporated them into the Roc’s IEP.  We got more OT for him each week and the therapist is going to do a consult each month with the teachers to talk about what is working, what some of his problems are, and how they can help him.  So we went from hearing “we don’t do that” to sensory stuff when we entered the public school system, to getting sensory accommodations written into his IEP a few years later.  I hope everyone now understands that sensory issues are a big part of the Roc’s day, and even though he is holding himself together really well in the classroom environment, he is working SO hard to do so.

Unfortunately, the speech therapist who was present at the meeting hadn’t been given a copy of the independent speech evaluation.  I wasn’t about to sign anything in relation to his speech services until this was read by an SLP.  So we agreed to meet after school starts and have scheduled another IEP meeting to be conducted with the therapist who will be working with him this year.  I am hopeful that she will be as thorough as the OT, and take the recommendations of the independent evaluator.  We will find out in 2 weeks.

It was a long meeting, and we still have more to cover when we meet again.  The supervisor of special education mentioned a social skills program that was started last year when she was touting how “progressive our district is in regards to autism” while the neuropsych was on conference call at the beginning of the meeting.  Later, when we brought this program up again we were told that the Roc would need a referral, that the program hadn’t started yet, they didn’t know where it was going to be this year, and that we would discuss that at the next meeting in 2 weeks.  Yup, we will!  Especially when in one breath we were told it was for children with autism, and in another we were told that we would have to see if the Roc qualifies!

Hmmm…I wonder if he does???

You can bet I won’t be letting this go either.

Inappropriate Labels

My son, who has Autism, was given the educational label of “Emotionally Disturbed” to receive services at school.  This happened back in the spring after he was evaluated by the Delaware Autism Program (DAP.)  Basically, to make a long story short, he wasn’t “Autistic enough” to go to their program so he cannot have the educational label of Autism.  Never mind that he has a diagnosis from a neurologist, a developmental pediatrician, and the psychologist at the Children’s hospital.  Oh no, those medical people don’t know squat, do they?  And forget about the MOTHER who has read, educated herself, and happens to be living with the boy who has Autism.  She doesn’t know diddly either.

Apparently.

Definitely disturbing.  So much that I haven’t really been able to let it go.

Can you tell?

I did add an addendum to his file stating that he has a medical diagnosis of Autism and added copies of his latest reports from said neurologist, developmental pediatrician, and psychologist.  I figured his new teacher would read his file before he started school.  Back in November I was disturbed to find out that she hadn’t read the whole thing (the addendum was most likely at the end.)  She didn’t know he had Autism until I mentioned it (and I mentioned it over the summer, thinking she’d read his file.)  She didn’t know that DAP holds the key to the educational label of Autism in our tiny state.  I filled her in.

Something else that has been niggling at the back of my mind is that the special ed teacher told me she read his Functional Behavior Analysis (which we wrote when the psychologist gave him the emotionally disturbed label) over the summer but has not had to implement ANY of it and hasn’t looked at it since.  He isn’t a behavior problem in the class.

Emotionally disturbed my ass.

Oh yes, I find this disturbing.

Recently I reached out to a couple Moms I know with boys on the spectrum to ask what labels their children have, and what I found out disturbed me even further.  In one case a boy with Aspergers has the educational label of Autism and the other has the label of Learning disabled.  All it took to for the child with Aspergers to get the educational label of Autism was a letter from his regular pediatrician stating that he is on the spectrum and how it could affect his schooling.  The other with the educational label of learning disabled was given that label because his biggest struggle was with adaptive behavior.  This is a child who taught himself to read at 4 years old!  He is not learning disabled!!  The school psychologist told me that the Roc didn’t qualify for the learning disabled label because he wasn’t showing any academic issues.  Well, he certainly cannot read!  And he definitely has issues with adaptive behavior!!

So now I’m seriously disturbed by all of this.  What an injustice to him to have the label “Emotionally Disturbed” following him around, tacked on behind his name at the top of his file.

So today I put on my advocate hat and called the school’s special education director.  Of course, I got her voice mail.  I took a deep breath, retracted my mama bear claws, spewed out a little introduction, and requested more information on how the district determines the educational labels they give their special needs students, as I have not been able to locate it on the state’s website, as well as a time to meet to go over a more appropriate label for the Roc.

We will see how quickly she gets back to me.  I always end my messages with a cheery:  “I very much look forward to speaking with you regarding this matter, talk to you soon!”

Oh yes, I look forward to stating the Roc’s case on this matter.

ROAR!