Great meetings….More anxiety? (Part two)

So why the continued anxiety?? 

Here it is…..We have had a long, bumpy, scary and consequential journey to where we are now.  We were at a loss as to what to do and where to turn.  We went through an alphabet soup of diagnoses and we trusted professionals that we thought were knowledgeable.  At one point we let the docs talk us into having our son on seven (yes, 7) meds.  When the psychiatrist prescribed number 7 and we let the docs talk us into checking the little brick into a behavioral hospital in patient program that would last a month, I saw my husband cry for the second time (the first, and only other time, was when his grandmother died unexpectantly).  The brick was only 7 and, my God, what were we doing??  How did we get here?  We knew we had had enough.  We talked to the staff at the hospital and asked that they remove as many meds as possible, the doc agreed.  He stayed for 2 weeks and was discharged with a script for Behavior therapy, a med for hypothyroidism, a med for ADHD and a mood stabilizer—three meds.  The BT was only there two visits and asked about Asperger.  I was blown away!  Not that it was mentioned, or that the brick might be an Aspie, but that I had missed it.  How, as a pediatric SLP, could I miss that??  And then more guilt set in.  Not only had we put our child through Hell, but for no reason.

Let me tell you right now—it is TOTALLY different when it is your child.  I had been on a team evaluating kids for ASD for 5 years.  It is different!  I don’t think I was in denial (because I did cartwheels when we got the diagnosis—it explained so much), but was blinded by parenthood.

I cry each time I tell this story.  It breaks my heart that we put our child though all of this.  That we tried to change something in him that he cannot change, it is who and how he is.  It was us that needed to change.  But, we didn’t know better, we trusted the docs. 

We got an appointment and diagnosis and, with the right interventions and less meds, things got better. 

The little brick missed most of 2nd Grade.  We got an IEP and a new school with an ASD class shortly after school started for 3rd grade.  The new school was the worst thing we had ever done.  The school and staff/teachers were awful!  They had the brick Baker acted and arrested (transported to juvenile detention in a cruiser) in the 4 months he was there, not to mention several suspensions and many days of being sent home because of “his behavior.”  Talk about teaching a kid to act out??  After the arrest, and it got to the point we were forcible removing him from the car in the mornings, we said enough is enough and called a lawyer.  I also kept him home from school.  After the arrest, I was not sending him back there.  They could arrest me for his truancy but he was not going back.  The lawyer helped us get a new school and the brick now thrives.  He had made up the lost education and is getting As and Bs in regular 5th grade curriculum.  He gets on the bus willingly and enjoys school.  He is a “buddy” to NT kindergarteners and younger kids in his ASD class.  He goes to art with no aide and participates in Gen Ed reading with no significant issues.  He is truly THRIVING.

Enter middle school transition……

Because the brick does not test well on the state’s standardized tests; he is going to have remedial math and reading.  I do not doubt that he can benefit from them, any child would benefit from extra help, but that means his schedule will be language arts, remedial reading, math, remedial math, science, social studies, and social skills.  Basically he will have six academic classes and one elective that he doesn’t get to choose.  We don’t even have an art class to dangle as an incentive.  He is finally doing well, academically, behaviorally and socially, and enjoying school and we have this…….

Now we have to decide.  Continue with brick and mortar school and what they can offer, blend the brick and mortar school with virtual school (our district has a program)—but this still means four core subjects, two remedial classes and social skills, only the four core classes would be at home on his time—or home school.  If we home school we can still take advantage of some of the school services (like speech therapy and, I think, social skills).  If the brick gets better scores this year on the state’s standardized test he may not have to take remedial classes, but we won’t get those results until July.  Talk about cutting it close.  We have talked to an advocate and there is no way around the remedial classes.

So, while things are looking good and going well, that only makes it harder to decide.  If the middle school had been mean and nasty, it would be easy.  But no, they were perfect!  If the brick could choose he would pick homeschool.  He is very anxious about the change.  He is worried about eating alone at lunch, navigating the hallways, finding classes and fitting in.  He knows what his challenges are and that he responds/reacts differently.  He knows the social consequences of a meltdown in front of typical peers.  And the older kids get, the less forgiving they are of those sorts of things.  While he would be going to the same school as the neighborhood kids for the first time since first grade, he has no neighborhood friends to hang out with.

I worry about him being bullied, being jostled in the hall and over-reacting.  About him being able to handle six academic classes (academically, socially and psychologically) and an elective he doesn’t want.  Can he keep it together long enough to make it though the whole day?  Can he keep it together for Gen Ed classes?  Will his behavior back slide?  Will he get the support he needs?  Will he get suspended for defending himself?  Will he get suspended for melting down?  Will he continue to enjoy school or hate it again?  Will he find a safe person that he trusts and can go to without feeling threatened?  Do we try brick and mortar and pull back if we need to?  If we do that what will it do to his self-esteem that is already so fragile?  What do we do?!?!?!!?  I know we will never know if we don’t try.  I am just not sure it is worth the risks. 

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3 responses to “Great meetings….More anxiety? (Part two)

  1. Let me preface what I say by noting that everyone’s experience is different but….let me just say that although we ended fifth grade (the last grade at our elementary) on our SOUREST note ever, at odds and fighting with our district because of how they jeopardized my boy’s education, the middle school turned out to be surprisingly wonderful. NO one was more shocked than me. You won’t be able to predict what the outcome will be but you know enough to take it ONE DAY AT A TIME and pull him out if the team fails him or is he feels as though he is not thriving. You can’t tell the future but you know your boy and you know when he is happy and when he is not. You can stop the brick and mortar at anytime you feel it is not longer serving his needs. Sparkles from Autism Sparkles.

  2. Oh my goodness! My heart breaks for you! There is no certainties in life and for your brick, even less so. Socialization is so important so giving the school a chance is a good call. Home and virtual school is always an option if the strain is too much for him to handle.

    Whatever you decide, you will always do what’s best since you are the one that truly knows him! Good luck in the journey! 🙂

  3. We finally opted out of public education and home schooling. But your son seems to have everything going for him. My son does not. I am sure it is scary for him and you as parents but as you said if you don’t try how will you know? I would try, I hope you do and I hope he excels and breezes right through it! We can’t shield our children from the world, he will one day have to face obstacles without you, this is how our children learn to cope with the world. We can only provide the tools in life for them to build their lives.

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