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!!

But Really, Why Do They Do That??

I get it, ok.  My kids are not neurotypical, so the usual rules do not apply.  I mean, I called Nathan's name 30 times, in his room, with the door shut and no distractions this evening before I finally got his attention.  Results not typical.

But these school events?  I just don't know if I will ever get used to them.  Today Jack had what was called "hoot tea" (the school mascot is an owl) at school.  The kids made these books that are "all about me" and they presented them to the parents.  This is awesome, and the kids were proud for sure.  It's just that everything about this was so hard for Jack. 

First, the making of the book for him was no doubt excruciating.  He had his ideas down, it wasn't that.  It was that every page was written, and had a picture.  Which meant writing and drawing- for a kid who just had an alternative technology evaluation due to his struggles with these very things.  A kid who has a scribe for any lengthy assignments because writing is just so challenging for him.   His book had magazine pictures pasted in it instead of drawn pictures.  He just didn't have the stamina to do all of the drawings that the other kids did.  God bless whoever decided to give him that option though, at least he had something to show everyone. 

So all the kindergarten parents came to school this afternoon for "tea" so the kids could present these books.  This involved the teacher reading a little autobiography about each child- about 20 minutes of sitting quietly.  Then each child came to the front of the class and "read" their books- another good 25 minutes.  So my child on the spectrum was challenged to sit still and quietly for 45 minutes in a large crowd of unfamiliar people with cookies that he couldn't have within site.  He could think of nothing else.  That is until one of the kids mentioned their pet hermit crab.  Then he could mention nothing else but that.  Then he had to present his book- he said something silly on the first page and then pretty much lost it- could not stop giggling, and it was contagious.  God is he cute.

It is so hard to keep Jack quiet.  Really it's impossible.  I was literally turning my hand in a circular motion (to signal, volume down) for the whole presentation.  When that stopped working, I went to "first,then".  All parents use this sometimes, and may not even realize they are doing it, but it is a huge thing for kids on the spectrum.  The incentive is essential to getting cooperation.  So it was "first quiet, then cookie."  I had repeated this so many times, and then when the presentation ended and the teacher said time to clean up the snacks I literally bolted across the room to grab that cookie. 

I took a huge breath- we survived.  And then the teacher suggested that the kids sign each other's books.  Great idea!  It's like a first year book signing.  I totally get it and it will be so sweet to look back at this some day.  And when the other kids do, it will be impossible for them to miss Jack's signature.  Because it takes up the whole page, haha.  I poked and prodded him to write each and every signature- the touching thing is that he really wanted to do it, and many of the kids made sure to come to him to get him to do it, as he was not perusing the room like everyone else.  What a huge challenge this was for him!  I am proud of him for doing as well as he did, and I am proud of him for making friends this year.  I watch him daily and see all of the challenges he faces- the distractions, the sensory stuff, the fixations.  The fact that he can overcome those things and start to build relationships is no less than miraculous.  Jack is miraculous.

But I still hate these school functions!  So there!

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me. 

A Great Way to End the Week!!!!

This afternoon I received an email from Jack's teacher entitled "today".  I have received many such emails by this point in the year, similarly titled.  The body usually contains "Jack fell asleep twice", "Jack refused to...." or "Jack broke....".  So ok, my heart sank just a little.  Imagine my surprise and delight when this is what it said:

We had a celebration in our reading group today because Jack wrote the words "do" and "this"  completely by himself on a white board with a dry erase marker!!!! Whooohooo! :))))


Well halleluiah!!!  Not only is it not bad news, it's really great news!  Today marks one week since I started doing "alternative homework" with Jack on the IPAD, which is all fine motor work for about 30 minutes a night.  It's a bit easier to write on the ipad (you don't have to press down as hard) and it sure gives you a heck of a lot of encouragement in the form of cheers, confetti, funny scenes to watch, etc.  I don' think this little success story is a coincidence.  And it's such a testament to what a great teacher he has- how encouraging she is. 

So how does one celebrate with two gluten and dairy free children?  Chick Fil-A of course!  And thrill of thrills we went "in" the restaurant, something Jack is always begging for and mommy almost never does.  Just a heads up for any other mommies that have their hands full.  If you go pretty early the cashier will come to your table if you are by yourself with little kids, take your order like at a sit down restaurant and bring the food out.  At least at the one we went to tonight.  Nice!!  The boys had a blast in the little play area.  Nate really just ran laps and laughed, but he was really happy.  Jack was playing well with the other kids, which was really nice to see...

Here's hoping the trend continues all weekend!