An Encouraging Start

Quick update on Mr. Jack’s first week of school.  Despite the two calls from school the first day, and the call from the Assistant Principal yesterday, things are going swimmingly.  The call yesterday was not about anything Jack had done wrong but rather because he said something that worried her.  When he saw her, he told her he had a feeling he would be coming to the principal’s office soon, and be staying there forever.  Luckily I recognized these words immediately as a direct quotation from the movie “Alvin and the Chipmunks Meet the Wolfman” and was able to reassure her.  She thought that he saw her and thought he was in trouble.  Although he did say something a little worrisome about being in trouble and needing extra help.  I think he may be actually noticing that he has more help than the other kids around him, so we will need to work on him understanding that it’s not because he did anything wrong or because he is in trouble, but because he just needs some help.

When I spoke with the assistant principal she also had some very encouraging things to say.  She observed him for a few minutes and noted that he was way more engaged than the last time she had watched him (last year), was doing his work appropriately, and staying in his seat.  I was really hoping that having his own individual desk, rather than the tables they use in the kindergarten setting would help give him a sense of boundaries and of where he is in space, which is something he really struggles with.  It seems to be working.  So despite the fact that I have had 3 mini-strokes each time the phone rang with the school on caller id, I have already gotten some really positive feedback.

The trend is continuing at home when we do his homework.  Which they started the second day of school for first graders- sigh.  Jack had swim lessons at 5:30 last night and we didn’t get home until nearly seven.  And we had to sit down and do homework.  Which he did- without complaint.  Not only without complaint, but the number of prompts required to prod him along was significantly decreased.  Even tonight, when homework involved the dreaded “cutting with scissors”, I told him to get started cutting out the required words while I worked on something else (figuring we would actually start the work when I was done, as never in the past has he actually followed through).  But lo and behold, I turned around and he was half way done!!!

You know, I often grumble that there is so much work involved in raising my special needs kids.  Maybe I don’t mention this part often enough.  When I see progress- the payoff is HUGE.  I feel like Jack is capable of climbing Everest right now.  I am starting this school year with a much more hopeful attitude than I was expecting.  I have been so worried, but after these few days I am starting to think that the growth that I thought I was seeing these past few months was not my imagination after all. I’ll never know if it’s normal growing up, OT, all the work we do at home, the study drug, or the chanting we do after he goes to bed (kidding!) but frankly I don’t care why it’s happening, I’m just ecstatic.

And tomorrow morning it’s time to put Natey back on the bus.  Still not used to putting such a little guy on a big yellow bus…

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

Frequent Flyer

Believe it or not, this is not about Jack and airplanes.  Well, it kind of is, since everything is about Jack and airplanes, ha. 

I went in to Jack's school AGAIN today, for another IEP session.  Before I get into that I will say that I volunteered in Jack's classroom yesterday and for once found it to be a fairly pleasant experience.  He had the special educator with him for "workshop" time (which is what I was there for) and she was fantastic with him.  If you are able to keep Jack somewhat on task when mommy is visiting you're doing pretty well.  I was playing a reading game with the kids and she even helped me a bit when a couple of unruly kiddos weren't doing a very good job of listening.  Of course I am afraid to pull out the wicked witch voice with someone else's kid.  Anyway, it was kind of bonding, which is a good thing.

So this morning, the advocate and I met with the full IEP team.  This team included Jack's teacher, the OT, the PT, the speech pathologist, the special educator, the school psychologist, a psychology student, the assistant principle and the school nurse.  Not intimidating at all.  The meeting lasted less than an hour and was really the least complicated one thus far.  It was basically a session devoted to planning Jack's next set of evaluations.  He is due to have them completed before his sixth birthday.  Also, his diagnosis needs to be changed from developmental delay to something more specific at this point.  I came home with loads of paperwork to fill out regarding his behavior and focus.  His teacher will fill out the same.  There are a mind-boggling number of different evaluations to be completed by the various staff members.  Luckily they have 60 days to get it all done.  I anticipate Jack qualifying for a significant increase in his services after this process is completed.  And it feels really good to get it all started.  I feel like I am slowly becoming more familiar with this process and it doesn't hurt that I am getting to know the team.  As I see them with Jack, my confidence in them is growing.  For the moment we seem to be on the same page.

Tomorrow I will be going to yet another meeting.  This one is at the special needs daycare center I have been considering for Nathan for his afternoon care.  I found out that two of his little ECI classmates are already going to this facility after class on the same bus Nate is on, so this is a huge comfort.  That being said, I am feeling very bittersweet at the prospect of having both boys out of the house all day.  I love having Natey nearby, knowing that if he gets a boo boo I can kiss it, or if he is trying to say a new word I will hear it.  It's hard to give that up. And I also have to consider the fact that it's already March.  Even if this center works perfectly for Nate's half days, summer break is right around the corner and then I will need care for Jack as well, and full day care for Nate when he is not in his extended school year program.  There is no way we can afford this center, full-time for both boys.  It would be over $3000 a month.  The center is considered a higher level of care than a typical daycare center as it offers things like social skills groups, speech, and other developmental activities.  So we may be eligible for some type of aid- grants or something.  The director can assist in this process.  Fingers crossed on that front.

So as you can see, I am really bored.  Ha.  I am also a busy little bee locating ipad apps that are appropriate for the boys and trying them out.  Jack and I tried a reading program before bed last night and he rocked it.  I am so excited to have this tool!

Mommy Knows Best

I went to the Principal's office today for the first time since I was in kindergarten and got in trouble for jumping in a puddle during recess.  OK, so really it was a conference room, but still.  John and I met with the principal and the assistant principal of Jack's school this afternoon.

 This meeting was the result of my visit to Jack's classroom last week, when I saw multiple things that really really concerned me.  I emailed the assistant principal, who is the administrator that participated in Jack's last IEP meeting and she had us in within a week for the meeting. When you have the ear of someone who can really help your child, you feel quite a bit of pressure to make sure you get everything out.  I wanted to make sure I painted a full picture for her of Jack, and of my worries.

So I started briefly at the beginning, I talked about the fact that I have known that Jack has these needs for a very long time and feel like he is a child who could slip right through the cracks; that I don't feel like he has ever had enough services; that he is crying everyday before school; that he is coming home with his work blank daily; that a boy in his class tells him to go away and stop talking every single time he opens his mouth and Jack happens to be seated right next to him.  I'm sure there was more, but I can't think of it right now.  I cautioned John before he came with me that I wasn't going to be holding back in this meeting, that it might be hard for him to hear all of these issues rapid fire.  He hadn't been able to attend the last IEP meeting and most of the communication with Jack's teacher and providers is through me.  So sometimes I think it can be quite a shock to step into a situation like this in the middle of the storm....but he did great.  Thanks for coming honey, I'm really glad you did.

The principal began her statement to me by saying that they have quite a few kids with aspergers at Jack's school.  She also said that they were astounded when they saw the IEP that followed him from his pre-K and how few services he was receiving- that they knew that has to change.  She told us about a little boy who was in a similar situation to Jack's several years ago who is now in all honors classes in fifth grade.  She was quick to assure us that she thinks it is appropriate for Jack to remain in this school, that he doesn't need special placement at this time.  I appreciated her saying that to me.  I do completely believe that Jack is capable of achieving at that high of a level academically.  She stated that one of the things that made a huge difference for this child was the ability to type all of his work either on a laptop or an ipad.  That his fine motor deficits were holding him back in so many ways- making his work slower, making him frustrated, causing him to lose focus.  And I can see that, although I certainly don't think fine motor is Jack's only issue (nor does she).  She did say that if we get Jack to a point where he is very proficient on the ipad that it can replace writing in school almost completely.  Handwriting is just not as important as it used to be, so the school has become very flexible about this.  Now I just have to find the funds for this among all of our expenses....sigh

They already had a new schedule typed up for Jack.  Before we even spoke.  He now has adult assistance basically for every minute of the day.  It remains a bit piece meal in that it is not the same individual all day.  But I understand that this is something they are scrambling to get into place.  The principal made me aware that she has spoken with the head of Special Ed for the county about the increase the school has had in need and has requested that they audit the school's needs vs the staff they are allotted.  She is trying to get a dedicated aid for Jack.  Mama can take a bit of a deep breath.  Also, she is going to ask the teacher to separate Jack from the child who telling him to go away all the time- Jack has enough challenges, he doesn't need someone putting him down all day when he is struggling to begin with!

Jack will have someone with him for lunch, for recess, for all academic areas.  It sounds like moving from class to class he will be ushered by the teacher, yes, kindergartners CHANGE CLASSES for subjects these days.  What the heck is that??? I didn't do that until sixth grade!  They organized the help by periods of the day instead of subjects which makes a lot of sense since the schedule seems to change daily.  He will also attend a social skills class weekly.

OK, I have to say this.  As his mother, I get that people around us may not always recognize the depth of Jack's issues.  Because he's chatty, because there are times (especially when he's in a situation where the ratio of adults to children is like 4:1) when he acts like a completely neurotypical kid, because up until now, he has often been able to compensate for his challenges because he's brilliant.  But mommy has known.  Mommy has known that he cannot be put into strange unfamiliar situations without his parents, and even then it's questionable.  Mommy has known better than to take him out in a crowd without major preparation, or somewhere where there is loud unpredictable music, or somewhere there are bugs.  These are all major triggers for Jack.  There have been many many times when family and friends have not seemed to understand why John and I have held back from certain situations, or seemed incredibly tense or uncomfortable in a particular venue. 

THIS IS WHY

Our child does not handle changing situations the way other children do.  He experiences all noises, movements, touch at a far more intense level than other children do.  And mommy has known.  It affects every aspect of his life, and it is our job, as his parents to protect him from situations that are too much for him.  There is no one else who knows him as well as we do.  And we have not been wrong.  We were never wrong.  I was never wrong.  I was doing the right thing for my baby. He can't follow his daily routine at school without constant adult assistance, if one fire alarm goes off it  causes him to wear headphones for a month,he can't sit down to complete one worksheet without being prompted approximately 20 times (this is not an exaggeration, at all).  His teacher is overwhelmed and she's been a teacher for 30 something years.  I said this to my mom earlier, and I feel kinda bad about it, but I feel vindicated.  I don't want Jack to have problems, but if he does, and I know about it, I want it acknowledged and addressed.  I don't want it minimized, ignored, or treated as bad behavior.  And it's happening!  After almost 6 years of me feeling like no one believes me, or understands how truly difficult this has been, it's happening.  Just thinking about that I feel my whole body relax just a notch.  My baby is going to get what he needs.  Because I won't stop until he does.  And I have been and will continue to do the right thing for him.  Ahhh...clarity

Mixed Emotions

So how is one supposed to feel after a meeting like the one I had today?  I have said it before and I will say it again- it is really hard to sit in a room of people and listen to them list all of your child's deficits.  And it will never never get easier.  After almost 3 years of this with Jack I have come to realize that.  So this afternoon was really rough- I always come out of these meetings feeling like I've either been beaten up or run about 2 miles more than I am capable of.  Just exhausted, emotionally and physically.  And this IEP meeting was almost two and a half hours.  Jack's difficulties were laid out before me- his lack of focus, inability to stay on task, the fact that he is slowly falling behind academically, his social awkwardness, his fine motor delay, his lack of motivation to complete tasks.  This is the bad part.

Here is the good....

For a mom who has known these things about her child for a long, long time, hearing professionals not only acknowledge all of this, but commend me for getting him this far is an enormous relief.  This makes me feel a little guilty, but....think of it this way.  What if you knew something was going on with your child?  But it was your first child, and those around you were telling you things like he's just really smart (true), he's very spirited (true), let him cry it out, he can't do it forever (wanna bet?), just take the airplanes away (ha)?  I remember asking his first preschool teacher if she noticed anything different about Jack. She said no.  Clearly she wasn't paying attention.  His next teacher noticed and finally I had a bit of validation.  Even so, I have never felt like his "team" has taken his issues seriously enough.  With Nate it's clear- he's not speaking, he's constantly stimming, he doesn't respond to his name.  With Jack it was never like that.  But I was the one trying to help him focus on crafts, games, puzzles, etc.  He would listen to books (about his areas of interest) for hours if we would keep going.  All this other stuff- he screamed when I tried to do these things with him.  Every single thing we ask Jack to do is a huge battle and it always had been- but he is charming and smart (and precious, sweet, and perfect), and he could mask much of this, even in a half day program.  While at home, life was basically a constant struggle to prevent or stop the tantrums.   Who am I kidding, it still is.   In Pre-K I felt like they were acknowledging the issues quite a bit more, but it felt like they were saying "send him on to kindergarten, let's just see what he does."

Well here we are.  I told the team today that I have been waiting for this moment for a long time.  I knew it was coming and wondered how long it would take.  Turns out, about 5 months in a full day setting.  Today the entire team agreed that Jack needs additional adult support for language arts, morning work, social studies, science, and math.  In case you're keeping score- that's all academic areas.  Upon hearing this, I burst into tears- maybe the team thought I was sad, but I wasn't- I was just so relieved.  I looked over and his teacher was crying too.  No joke.  You could tell she was relating to our situation- once a special needs mom, always a special needs mom.  Thus far Jack has been getting assistance in language arts only.  He will now be pulled to a small group for reading, to a room with an aid for math, the special educator will be with him for social studies/science and the aid will be with him for language arts and likely morning work as well.  This feels like a bit of a piecemeal solution, but it is a solution nonetheless.  And he has his assessments coming, which will likely qualify him for further services.  All of these additions are coming before that even happens, which gives me great hope for this school. 

The advocate?  I have a whole new perspective.  I was still kind of wondering what exactly she would do.  Here are the things I observed:
1.  Her being the "nitpicker" about language and inclusions in the documentation allowed me to be able to discuss the big picture issues with the team without being the "bad guy"
2.  She knows how things need to be phrased to make sure that they are done, she knows to ask them if they require any further documentation in order to get funding for Jack's needs
3. She caught something BIG today.  When I first discussed his IEP with her, I told her my concerns, which I blogged about last week.  That they were only allotting 30 min/day of special ed services.  I told her I felt that he needed more time with an aid and she said that that was irrelevant to the special ed services section of the IEP.  I was confused but figured I could ask about this further today.  Well, in the meeting, she inquired about what was being done during these 30 minutes each day.  The educator stated that this was the time the aid is with Jack.  Ummmm.....turns out this was a BIG no no.  The special educator has NOT been working with Jack directly, basically at all.  All of his special ed time has been with the aid, and the aid time should be separate from the special ed time, which is the time when the special ed TEACHER should either be coming into the classroom or pulling Jack out.  So this was documented, and now the educator will be spending this time one on one with Jack on a daily basis AND the aid will be coming in.  I NEVER would have known to call them out on that.  In my eyes, he was getting jipped. 

So I am glad I hired the advocate.  I am glad that the team is acknowledging the full extent of Jack's limitations for the first time.  While it's hard to hear, in Jack's case it is way overdue.  I am hoping that now that the academic team has seen this, and they agree that he needs more help, we are on the right path.  Next meeting is Feb. 28th, to finalize the assessment plan.

Big Day

Today is Jack's IEP meeting.  For the first time, I am not going alone- an advocate is coming with me.  Unlike before other IEP meetings several drafts have already gone back and forth, information from Jack's private providers has been shared and I have provided a detailed parental input document.

I feel like a little kid going to the principal's office.  I need to shake this feeling off and go in with the attitude that the school has a responsibility to provide these things for my child.  I am glad to have a teammate, I am glad that I feel prepared.  I have examples of Jack's work and I have my boxing gloves tied around my neck- will not put them on unless necessary.  I want to have a good working relationship with these professionals as we have a long road ahead of us.  I feel as though this meeting will be very telling- will they compromise with us?  Will they take my concerns into consideration?  How they react today will tell me a lot about what the future holds. 

So please wish me luck.  Deep cleansing breaths. 

Explain It To Me Like I'm a Two Year Old...

I got the "draft" copy of Jack's "new" IEP today in his school folder.  The meeting is in a week, and parents have to get the materials ahead of time.  Fine.  I didn't want to look- the fact that it even came with the disclaimer that "not much will be different because Jack is going to be reassessed" should have tipped me off.  And this is true, next Thursday I will be signing consents for this reassessment- his "label" thus far has been developmental delay, and this will be changed to autism.  OK fine.  But I looked anyway.

Really?  After all I have heard and been told this year, the talk of the weakness of his grip and his sensory issues, he still only needs 3 30 minute OT sessions a month??  They did increase his special education time, which was an hour a week.  They increased it to 2.5 hours a week.  Out of 35 hours in school.  When I already know that he has been having an aide an hour a day and this is not adequate- this per his teacher.  So this increase doesn't even cover what he's getting.  How does this make sense??? Someone please explain this to me....

Once I sign consents for assessments they have 6 WEEKS to complete them.  And then when they draw up the new IEP they have 4 weeks to implement the changes.  I am not a mathematician, but doesn't that take us almost to the end of the school year?

Medication=Fail! Lessons Learned

I wrote a few months ago about the option of putting Jack on medication for his ADHD like symptoms.  As his pediatrician stated, these symptoms are very common in children with Asperger's- she was supportive of us either way.  Jack's teacher has had the very frustrating task of trying to help him focus in class- and not hyper focus on things like airplanes.  She was supportive of a medication trial as well.  So we took the plunge- hesitantly- so more like we dipped our toes in and have now yanked our frozen feet out of the water and decided to go another route.

There are a bazillion ADHD medications on the market.  99% of them are stimulants, which has always seemed counterintuitive to me.  Our first attempt with medication was to try one of these- focalin.  We started with a low dose and gradually increased.  And here is where the issue lies for kids like Jack- he has major sensory issues right?  These stimulants take these issues and multiply them for these poor kids- my baby wore headphones all day every day at school for nearly a month because of this medication.  And he was sleepy most of the time.  I called the pediatrician and said "NEXT!".  So then we tried the medication in the other 1%- intuniv- a non-stimulant ADHD medication that originally was prescribed for hypertension in adults.  This medication has for the most part been used to enhance the effects of the stimulant drugs, but our pediatrician and others have had some success using this agent alone in Asperger's kids.  One caveat- Jack had to learn how to swallow a pill.

Mommy tried everything (I thought) to aid in this process- we tried pudding, applesauce, ice cream, chocolate sauce, etc.  And mommy also sat and stared at Jack for hours after he had accidentally chewed these slow release pills- checking capillary refill and level of arousal as I was afraid he would have a hypotensive episode.  Guess what worked?  JUICE.  Gulp, gone.  He can take 2 and 3 pills at a time, who knew?

The result of this medication- you have been watching me live it, you just haven't known the reason.  First, Jack has been falling asleep in school multiple times a day.  Second, his OT was in tears at one point because he just wasn't "Jack" anymore (and I agreed).  Third and most disturbingly- the sleep issue.  Jack's anxiety at night was through the roof- waking 10-15 times a night.  I have slept at the foot of his bed more nights than I care to admit out of desperation for a little rest.  And if I so much as shifted like I might get out of bed, Jack woke up and called out for me.  He had other side effects as well, although we can't be sure if it was truly the meds or if it was lack of sleep- he was being mean to the whole family, using bad language, just not himself.  Although when at school and AWAKE he was supposedly focusing a bit better on his work.  I doubt this was actually the case, although I am sure he was quieter because he was exhausted.  I cried UNCLE about 2 weeks ago now and we started weaning him down, and giving him clonidine for sleep.  His doctor warned me to give him only half a tablet initially which would probably knock him out- try 2 full tablets, and then he would stay asleep for about 2.5 hours. 

Last night I finally saw a light at the end of the tunnel.  He only woke up twice.  Granted I fell asleep at the foot of his bed and stayed there- but he didn't wake up this morning until 7:30.  I cried. 

So if you are wondering why I am being so diligent and adding so many different biomedical interventions it is because I want to avoid medications unless absolutely necessary.  They are too rough on Jack.  And frankly, how can I be sure that these ADHD "symptoms" are really that?  It's more likely that his sensory issues, lack of over all core strength and hyperfocus on his  areas of interest are what is causing these issues.   Medication is not the answer for that- school intervention is.  Enter IEP advocate.....

Feeling Lost

This will be short and sweet because with a migraine and complete lack of sleep I don't have energy for much more.  Met with the advocate this morning and am completely overwhelmed.  With two boys on the spectrum whom you love more than life there is never enough money, enough time, or enough resources.  That being said, this is a step.  I have to find a way somehow for that to be enough for right now.  The advocate has a wealth of knowledge and many ideas, certainly much to add- these are the positives.  The negatives?  I feel completely inadequate as a mother and advocate for my children.  There is so much I don't know, so many directions I am just not aware of.  The boys' IEP's are completely lacking and I haven't known enough to fight for the right things.  Just when you think you are making some progress, you feel like you are told you are 30 steps behind where you thought you were.  It's just disheartening.  It also reemphasizes our need for help.  So help is what we are going to get. 

Just Another Day....

Of thinking "if I can just get through today".  And I did.

First up was Jack's parent teacher conference.  I received an updated IEP on Friday and was shocked when it said he was progressing sufficiently.  Ummm....wait a minute, this is not what a million email conversations have indicated.  Well apparently he is "progressing sufficiently" DESPITE all of this.  AKA the kid is brilliant...duh, I could have told you that.  This doesn't change the current issues that we are dealing with.  I was impressed by all of the adaptive tools they have in place- a wiggle seat, a lap pad, a slanted writing surface.  They are also using the weighted pencil.  He is viewed positively by his peers despite his interruptions in class and the headphones that he continues to wear on his ears all day every day.  We talked about strategies to slowly wean him from this- setting a timer for how long he can wear them.  I advise against one that rings for obvious reasons.  Ha.  But seriously, it is amazing how traumatized he was by the smoke detector going off at home.  He noticed the visual fire alarms at school for the hearing impaired and has become obsessed with them.  We went to the mall and a movie yesterday and he pointed out every single one to me and asked if they were going to go off.  We have a lot of work to do on this.  The school board advocate apparently did acknowledge that he needs more services.  They have assigned an aide to him for 30 minutes a day during the most crucial work he does.  Yes I said crucial, yes he is in kindergarten.  Sigh.  So the issue at hand is that this is still not enough, per the teacher's report, and not only that, this is something being "granted" to him "for now".  If another child enters the school with a behavioral issue or more needs, they will reallocate these services. The reason?  They are not written into his IEP.  Next step- guess who has to call the IEP meeting?  Yours truly.  His next one isn't scheduled until the end of February and that is too long to wait.  I have been dreading this one.  I need to do my research, know our rights, etc.  I told her I will do it, but would like to get my almost 3 year old started in his new program first.  She and the special educator were present for the conference- it last almost an hour, which seems like they spent quite a long time with me- we got 15 minutes tops last year.  The teacher was really going through the "back door"  procedures with me, talking about red tape, etc.  I could tell that the special educator was getting a titch annoyed.  She is a little green- just started at this school in September.  Jack's teacher turned to her and said something along the lines of "I know this is your area, but I have been at this for 25 years and I know what I'm doing.  AND I have been through this myself as a parent."  OK, how do I keep getting this lucky???  No wonder she has been so awesome!  She has been on the other side of that table advocating for her child who needed extra help.  Makes total sense now.

So with that plan in place and the knowledge that despite all of his challenges he is progressing, I headed back to work.  At the end of the day my mom came to watch Jack so that I could take Nathan to his new school for "orientation".  He fell asleep on the way over and slept through much of the meeting.  I felt really bad about this and kept trying to wake him, but he was OUT.  When I finally got him up at the end of the meeting he would go no where near the new teacher--- with time I guess.  We talked about the routine, etc and the teacher wanted to know a bit more about Nathan.  In general it went very smoothly and they were very receptive to his dietary restrictions, etc.  Seems like a good program- makes me a little sad that we are going from a 1:1 ratio to a 1:2-3 ratio of teacher to student, but it was bound to happen.  It sounds like the days of "drills" are over, this will be a different approach.  And not all of the children in the program are on the spectrum, they are all developmentally delayed, but there will be a wider range of skills and abilities.  I guess I just have the same concerns that any parent would have when sending their kid to a new school, multiplied a bit by the fact that I am afraid he won't be able to express his needs.  He will be 1 on 1 with a aide on the bus, so that is reassuring.  That being said, he gets picked up at 8:35am and school doesn't start until 9:10.  And school ends at 11:50 and he isn't scheduled to be dropped off until 12:35.  That's a really long bus ride for a little guy.  The next few weeks are going to be a huge transition for him.  I am feeling lucky that our sitter will stick around for now, despite losing lots of hours of work.  She is trying to sell her house and move closer to her grandkids, so it doesn't really make sense for her to look for a new job right now.  This will be a very good thing for Nate- 1 big change at a time.  OK, I vow that this was our last kid meeting until January.  Only thing I can think of is Nate's 3 year check up.  Piece of cake.

Unspoken Words

 

Nathan and I have an amazing bond.  Of course Jack and I do too, but with Nate it's different.  I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself.  Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted.  No, we're not in that place anymore, but we certainly lived there for a very long time.  And the language Nate has now remains limited, and his use of it does as well.  So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it.  There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can.  And Nate is well aware of that.  He comes to me whenever possible, and then to daddy.  It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents.  What a huge responsibility this is.  On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively.  This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game.  I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job.  And it is the most difficult of the three by far.

As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come.  Until it happens.  For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy).  Then she clapped her hand over her mouth.  I just smiled and said that's completely true.  Hey, I watched it with Jack, and Nate.  I know what she's talking about.  I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off.  She said this is extremely common in children with autism.  For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!".  Guess what I spent this weekend working on with him?  And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go".  He needs that incentive.  Every single word we gain needs a similar motivator.  And the consistency has to be well, consistent. 

I am learning many new techniques in the seminar.  And working my tail off on applying them in daily life.  Really it feels like creative cruelty, or professional withholding.  Poor Nate.  But some of it is working.  Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?"  If it's cup or pops, we're golden.  Anything else, we're screwed.  The closest we get to a name is "and that, and that, and that".  Which is a huge improvement, but helpful? Not really.  If it's pretzels, I hold them out of his reach and wait, and wait.  Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great.  If not, then I say the full word.  The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever.  I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy.  Another technique is working on "choices".  He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants.  The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step.  He is doing pretty well with this.  Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock.  It's not like he's torn. 

I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc.  One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height.  So if I say "time to go night night" and he screams, I say "no night night mommy!"  Help him express himself with words, and also let him know that I understand.  I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step. 

Tomorrow is Nate's first "big boy" IEP meeting.  Blah.  We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked.  Good thing.  Of course, as always, reading this crap was really comforting- yeah right.  They put my boy's receptive language in the first percentile and his expressive language in the second percentile.  They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language.  At all.  They put him at 11 months last September, and that is what the Child Find evaluator put him at last month.  I call BULL _ _ _ _!!!!!!  Either he had a bad day when they observed him in class, or they "over" evaluated him the first time.  Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor.  Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand.  And this is true in every aspect of daily life.  He knows and understands SO MUCH MORE than he did at this time last year.  So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation.  Because we know our son better than they do.  And they are going to put the worst case scenario in writing in order to get him the best services available.  And that's what I want for him.  So I guess I just have to take it.  And keep working, and working and working. 

Taking Steps for Jack

I got a chance to really talk to Jack's teacher yesterday afternoon which was extremely helpful and encouraging.  I am very impressed by her take charge attitude and unwillingness to accept the party line.  Reminds me of someone else I know :).  She has been a teacher for many years, Jack's pre-K teacher from last year used to work with her at a different school.  I am starting to think that she may have facilitated his placement in her classroom.  Anyway, Jack came back in from recess and continued to cry and need the headphones.  He was convinced that the red light on the smoke detector in the classroom was really an indication that it was about to go off, no one was able to convince him otherwise.  I really hope we don't have a recurrence today, but he seems like he is in a pretty good place this morning, didn't wake up last night, etc. 

As much as I hate that Jack went through this, and frankly that his teacher went through this, it was probably a good thing for his long term services at school.  Jack is such a great kid that until you actually witness his extreme behaviors, it's difficult to believe they exist.  Well now they know (and knowing is half the battle- sorry GI Joe moment there).  I asked his teacher how the observation with the school psychologist went and she said it was useless, as Jack was fascinated by what they were doing at the time and sat still and paid attention.  Typical.  Then she said that she didn't want to get my hopes up, but she has contacted the school board resource person to come observe Jack in class.  She is apparently a person with the power to allocate more resources to Jack.  So once again, the teacher is being very proactive.  She did go on to explain to me that the issue is that Jack does not have behavioral problems. Trisha- you hit the nail on the head in your comment on facebook about my post yesterday.  He is not "dangerous", he is not disruptive to other students, other than interrupting during stories with comments, etc.  Unfortunately the resources always go to the child that could be a danger to himself or others first- and that's appropriate.  The problem is that with limited resources, where does that leave the kids that need help for developmental issues?  Screwed basically.  She suggested that if this person does not make the decision that more services are required, I need to call an "emergency" IEP meeting.  A parent has the right to do this at any time.  And I am prepared to do that at this point.  This brings me back to my second or third post ever, where I was questioning the need for an "advocate" in IEP meetings.  Eating. my. words.  I get it now.  It's not a matter of me not wanting to go to bat for Jack- I of course will be there every step of the way, but how aware am I of the resources that are even available?  How do I even know what to request?  There are some informal resources that I will probably consult first, but if it becomes necessary, I am also willing to take this step.  Sigh

The next call I made yesterday (yes it was a busy day) was to Jack's private OT.  I wanted to make her aware of the problems Jack is having, pick her brain, and see if she would be willing to work with Jack's school OT.  She was very willing to do that- I just have to sign a release at our next appointment.  She is even willing to go observe him in the classroom if it becomes necessary.  School OT's are not really in the classroom to deal with the sensory issues that Jack has.  They are there to deal with the fine motor issues that prevent him, and other children from completing their schoolwork.  So his private OT may be able to assist with some strategies to make the classroom a more suitable learning environment for Jack.  She is also putting together a list of potential interventions that we will go through at his appointment tomorrow.  On this journey, we have been blessed to connect with some really really amazing practitioners.  She, and Jack's teacher are definitely among them.

So I am feeling a little calmer, a little more "in control" than I was yesterday.  Plans are good.  Interventions are good.  Keep the positive thoughts coming- your support is invaluable to me.

Navigating the School System When Your Child Has #Asperger's or #Autism

I am venturing into dangerous territory these days.....but I am feeling overwhelmed about how I should be approaching Jack's issues at school.  I do not want to be a parent that the teacher dreads talking to, I don't want to be a parent bully.  But I am worried that my son is not getting all of the services he needs at school.  It just doesn't seem right to me that a child with what I would consider substantial fine motor deficits is only seen 3 times a MONTH at school.  And gets 30 minutes of special education a day when he can't sit still in his chair for 5 minutes. 

I volunteered in Jack's class yesterday- it was actually a very pleasant experience in terms of meeting the other kids and watching Jack handle the transitions fairly well, even with mommy there as a distractor.  He went from center to center without complaint, even though he wasn't coming to mine right away.  When he came to mine he talked to me A LOT, but didn't completely monopolize my time.  That being said, yesterday morning was the time that the OT was working with him, so she was moving from center to center with him and redirecting his attention frequently.  And she is good.  The three times a month that she gets to see him.  Which is not nearly enough.  But even after she left, Jack sat on the rug with his lunchbag waiting to go to the cafeteria, he did not get up and come over to me, until his name was called for lunch, at which time he came up and threw his arms around me and said "mommy, I sure am gonna miss you!".  What a kid.  I met the three little boys he is constantly talking about- they seem like nice kids, and they had quite a lot to say to me about Jack, which was so cute, and comforting at the same time.  They like him too!

The rough part- the "center" I was running involved cutting pictures out of magazines and writing the names of the objects (all starting with S).  So I helped every child in the class spell and write these words.  And I saw where Jack's handwriting is in comparison to every other child in that class.  I can't even explain it.  All of these letters were formed completely independently, from dictation.  Half the time we need to hold Jack's hand still and force him to form the letters.  His strength is not good either, it is a constant struggle to get him to push down with enough force to really make his writing readable.  In class he has the short pencil, a special grip, and a slanted work top to try and help him gain more control.  And the OT was drawing a box where each letter should be in order to try and help him keep his writing somewhat straight, as he is usually all over the place.  Did it help?  I think so.  But what good does this really do for an hour once a week????  How is he supposed to retain these techniques when they are done so sporadically?  I am sure the special educator tries to reinforce as much as she can, but there is no room for much individualized attention in a class of 24 5 years olds, so how can his teacher be expected to do these things regularly?  The school psychologist is coming to observe Jack on Thursday, and I am hopeful that there will be some recommendations for changes, or in other words, increased services.  If there are not, then mommy may have to request an IEP meeting.  It's October, there is plenty of time to get a good system in place for Jack.  And telling me that they are "short on aides" is just not going to cut it with me.  If there is a need, they need to fill it.  End of discussion.