O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

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!!

Ode to the IEP

This is how far I have sunk people....really far

Twas the night before IEP's and all through the house
Not a creature was stirring, well, except mama
The papers were stacked by the front door with care
Because mama knew that IEP day soon would be there

The children were nestled all snug in their beds
With visions of zip lines zooming through their heads
And me with my coffee and my highlighter out
Tried to discern what these "goals" were really about

2 out of 3 trials independently they said?
They want Jack to learn to stand on his head?
He would benefit from all of these things they declare
But when I look at interventions, well, none of them are there!

Additional adult support is the key
I used to think that that person could have beeen ME
A scribe will assist my little boy with his testing
He can think more effectively with his little hands resting

Break down his assignments into smaller units
How the heck will his teacher do this with 25 other students?
Not to mention the behavior chart with rewards they suggest
To encourage my boy to always do his best

A slant board, weighted pencil, wiggle seat and lap pad
At school my son looks like he's starting a new fad
Make Jack repeat the information he heard
Don't you get it?  He really wants to talk about a bird!!!

In the frustration mommy feels she isn't alone
The staff wants to help but resources are dry as a bone
So I fight, and they fight and we hope for the best
Knowing the battle for more funding will be the true test

When I feel like screaming, I let the advocate do the talking
Because if I said what I wanted, they might send me walking
I try to stay calm, after all this isn't my first time
My kids are 3 and 5 and this is IEP meeting number 9!

We'll make it through this day and move on from this meeting
And pray that my son excels with preferential seating
As a mom of a special needs kid this is the dance
Working your butt off to give your amazing child a chance

So sleep will elude me tonight there's no doubt
I'll dress up in the morning even whip the makeup out
I'll advocate for my son and when it's all over
I'll pass out in my latte then get under the covers
On Friday we'll start to implement all of these plans
As I constantly remind myself that my baby is in really good hands

Yep, I went there

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!

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.