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.  


  1. Being a parent often brings conflicting ideas on what is best for our children; however, it's obvious that you have spent years trying different things, and learning more about your options. So going forward, without regret or wishing you had done something else, don't look back. Just keep looking forward. We never know if it's the right decision until it is made and then tested. You are going in to this with the knowledge you need to make the decision. Then all you can do is cross your fingers and hope things turn out all right. Just know that there are no right or wrong decisions and that you are doing the best with what you know now. I think things will work out so well that you will wish you had made that change earlier. (Fran Vassey Willis)

  2. One UK pediatrician commented on my autism science blog that he had great success with Baclofen as a treatment for kids with Aspergers and anxiety. This is an off-label treatment and he said it was effective in 70% of cases, there were no side effects. Most psychiatric drugs used for ADHD/autism have big side effects. Baclofen affects GABA, which is implicated in numerous autism studies. A more potent version arbaclofen, is an autism research drug. Baclofen is a cheap generic drug. It seems to help people with Aspergers, but not more severe autism.