Sunday, 27 December 2015

A New School For Jack

I have been sitting on this for over a week now, I knew that I needed to write this, not only to keep friends, family, and other followers in the loop, but also to process all that has been going on for my own sake.    In a year of many changes for the boys, these past 2 months have led to quite possibly the biggest and most traumatic change for our family in a long time.  My husband and I have been to multiple IEP meetings (again) this fall, and through many discussions between us, with educators, therapists, administrators, and advocates.  And we finally came to a decision. 

Jack is moving to a new school in January, another mainstream elementary school, where they can better “accommodate” him.  I have had soooo many people ask why this can’t be done at his home school, where he has been since kindergarten.  There is no easy answer.  There is no real answer.  Jack has had significant special education services in school since about midway through kindergarten.  But to be honest, it has never been enough. 

He was diagnosed with Asperger’s at age 3.  At that point he was provided with (minimal) special education services in his regular preschool.  He probably should have gone to the same early childhood intervention program that Nathan went to; it probably would have benefitted him greatly.  But, for lack of a better explanation, he could talk his way around it.  He sounds (and really is) so smart when he opens his mouth, he knows so many facts; he has ALWAYS been able to talk (well since he was 18 mos).  When they have autism, adhd, and anxiety, the ability to speak is such a blessing for a child as it relates to being able to communicate what they need, and such an obstacle when trying to get this child what he deserves.  This is coming from a mom who has one child with speech and one who struggles tremendously with verbal communication.  Speech almost automatically lumps a child into the category of “high functioning” and sometimes that just isn’t the case!  Do I think Jack is high functioning?  Maybe.  I honestly don’t know what I think at this point, and I don’t know which behaviors are autism, which are adhd, etc.  The comingling diagnoses complicate the situation all the more. 

What I DO know is that this little boy has had significant challenges since birth, with self-regulation particularly- there was never any self-soothing, or entertaining himself, constant attention has always been required.  And as exhausting as that is for us as his parents and for his educators as well, I can only imagine how exhausting it must be for him. 

He went through public pre-K, with again, minimal special education services.  He arrived in kindergarten with an hour of special education services a WEEK.  A titch of OT.  NO speech.  It makes me shudder even now to think about how much more he deserved and required back then.  We hired an advocate to come with us to his kindergarten IEP meeting, and he ended up with an aide full time, including the walk to and from the bus, and lunch, recess etc.  He needed that much guidance, which to me and his father was a “duh” kind of moment.  But it took a lot of fighting to get these initial services for him.

We have slowly added speech services (for actual conversation), more pull out services, and assistive technology to his IEP.

Before school work became multi-step and required more attention, he could compensate for his challenges to a certain extent.  We are way past that point and for the past 2 years we have watched him struggle, particularly with math.  Here is a hint of how smart he is though- through all of his attention issues, his obsessions with other things, obstacles in other areas; he has been able to maintain grade level performance in reading and spelling.  I would estimate that he is able to maintain probably 10-25% of the amount of attention that the other kids have.  This makes me proud, and it makes me sad, because I can only begin to imagine what he could do if we could get his full attention for a little more of his day.  That being said, we have tried 6 ADHD medications- he has had significant issues with all of them.  He is in therapy for his anxiety, ABA for his behavior and focus, and we have tried a multitude of other medications for anxiety,etc.  We can’t seem to get him there.

Add in a school that is “highly ranked” academically and known in special education circles as not being “friendly” to kids with special needs, and it’s a recipe for disaster.  Now I need to say one thing- the actual special educators who have worked with Jack (at least since first grade)?  They are nothing short of amazing people, amazing teachers.  People who will go above and beyond to give your kid what they need, even when they are not allotted the time and resources to do so.  We have not felt the support of the administration when it comes to keeping our son at his home school.    I know of multiple kids in other local schools with more involved IEP’s who remain in their home schools despite the fact that there is no dedicated “pull out” classroom available to them.  Children who are fully out of the classroom for language arts and math, who are not potty trained and remain in their home schools.  Yet, we are told that because Jack requires pull out for math and language arts (and require is a strong word in language arts, let’s just say he makes the majority of his progress in this setting)- his school cannot accommodate him because they do not have ”full pull out” capability.  When I was first told this, I wanted to fight, I wanted to scream and tell them my son deserved to stay (because he does).  Then I thought about Jack.  Really thought about what he needed.  His behavior has been worsening at home, he fights homework even more than he used to, his anxiety across all settings is much worse.  All of these things are symptoms of a larger problem.

I know he feels the pressure of not being able to keep up, of not being fully accepted as he is.  I know that because he is unusually self-aware, he knows he is not “the same” as the other kids in school.  And it is bothering him.  A lot.  There were two choices for us as his parents- we could fight, go to mediation, force the school to comply, keep Jack there, and watch him continue with the same struggles because let’s face it, no matter how hard these teachers work to give him what he needs, their other responsibilities will not be lightened-- OR we could change something.  We choose to change something.  We chose to send him to a school with a formal “pull out” classroom, partly for this feature.  To be honest, there were several other deciding factors- the school is much smaller, the faculty has the reputation of being “special needs friendly”.  And that is the real reason we agreed.  Parenting is HARD.  Other parents may have come to a different decision- but we have come to understand that “fighting the good fight” is not always what is best for our son.  While we want him to have what he “deserves” (aka to be able to stay in his home school), we also have enough perspective to grasp that maybe he deserves even more than that.    We have seen what a school that functions with a greater degree of acceptance can accomplish just by watching Nate this past year in his autism classroom.  And to be clear it goes both ways- not only is Nate greeted with more acceptance by the faculty and staff, but the other kids in the school are taught to accept children with differences  at a much different level than where Jack has been going to school.  The atmosphere is completely transformed.

I have known this was coming for a long time.  A loooong time. We have two neighbors who have children with special needs.  When I told them 4 years ago that I was sending Jack to our “home school”, the response I received was ominous at best- “good luck”.  Ouch.  Both of these other children ended up in different placements- the parents wanted them out of the home school by the time they went.  And now I get it. 

Please keep our sweet boy in your thoughts - this is such an enormous transition for him (and our whole family).  And from his perspective it has all happened so quickly- we didn’t tell him about it until a definite plan was in place, and unfortunately that was just a week ago, and then his last day at his current school was last Wednesday (yes, the day before Christmas eve, I know).  After Christmas break he goes to his new school.  He will miss his friends, his teachers, and the aides who spent countless hours with him every single day.  I know he will form new bonds, I just wish he didn’t have to.  

Sunday, 6 December 2015

Why I'm Not Having A Birthday Party For My Son

Nathan is turning 6 this week- SIX!!!    He has come so far, and we are so very thankful.  And here's the thing, so have we, as his parents.

Thus, we are not having a birthday party for Nate this year.

Parents can all acknowledge that the first few years of our kids' lives, the birthday parties aren't really about the kids- they are about the parents, family and friends celebrating the child (and the act of keeping them alive lol).  But as kids get older, that all changes- the parties revolve around the child's interests, their preferred activities, their preferred friends.  And that's how it should be.  Two years ago, Jack's wish was to go to the Museum of Natural History with mom and dad.  So that's what we did.

What have we been doing with Nathan?

We have been guessing.  He "seems" to like Mickey, let's try that this year.  What should we do?  Who should we invite?  It has continued to be OUR friends, people we know through various organizations, autism causes, etc.  Which is fine of course, but was it about Nate and what he wanted?

Well how could it be?  He can't tell us.  It's very similar to how I continue to play detective whenever he is "fussy", trying to figure out what is wrong.  He still can't tell me, although he is getting closer.

He watches the same scene of "Frozen" over and over again- does he like "Frozen"?  Or the movement of the snow in that scene?  Or the noises?  Or the song that is playing?  If I did a Frozen themed birthday party would he love it?  Or wish for an avalanche themed birthday party (because that's the part he is watching on repeat)?  Let's take it a step further- does he want a party?  Does he like being in a crowd?  When do I, as his mother, know that he is actually happy??


Right Here is my happy son

Below is a situation that would make most kids ecstatic.  I took Nate to our local toy store today, just let him loose, and waited for him to "find" a toy he would like for his birthday.  There is a snip it of that situation in this video.  We were there for over an hour.  He sat on one riding toy, and played with the jingle bells.  I bought the riding toy- but only after making sure the toy store accepted returns.  

As with most things in our world, results are not typical.  So guess what?  We have decided birthdays will not be typical either!  I am not wrapping his presents this year, I am setting them up.  I have no expectation that he will play with any of them, at least not initially.  I have some new beads I will give him, because I KNOW that will make him happy, and it's HIS day.  He deserves to feel happy!  
We will have chick fil a for dinner.  I will make a cake, with a little hill and olaf rolling down it (aka the avalanche) and we will probably all say "what the what?? THAT happened" (if you've seen the movie you know).  We will get in our jammies, and cuddle in bed with one of the sweetest boys who has ever lived.  

And that is how we are gonna roll!