I think the first time I noticed my son was going to have difficulties in school was when he was 4 years old.
He was in a special education pre-school program and got off the bus at the end of the day with a 103 fever. He told me he'd had a headache all day. His teachers didn't know because, at that time, he did not speak to anyone but me.
Yes, his teachers should have seen that something was wrong but they didn't. They didn't when he had an accident and spent the whole day in wet clothes, and they didn't when they marked him as "significantly academically delayed" because he couldn't say his alphabet.
He knew the alphabet, of course...but he couldn't say it when asked if he knew it. It was easier for him to shake his head "no".
Over the years, he began to start speaking to peers first, then over time, select teachers. By the time he got to the third grade, he was speaking to everyone at school. *phew*
All ends well. Fin.
Not really.
Xander began having major panic attacks about going to school. Having multiple diagnoses, on any given morning there were obstacles to overcome. Here's a blog post about one of our morning battles.
Whether it was a round of particularly brutal tics caused by his Tourette Syndrome, an epic meltdown over socks that were "not right" (thank you, Autism), a blind rage caused by either his ADHD or the Disruptive Mood Disorder (those two spend a lot of time together), or your run of the mill panic attack or upset stomach due to yet another medication. There was always something.
"Perhaps he needs a specialized environment that would help him adjust to school after a rough morning", I thought. So I started asking his school for a referral to a therapeutic school. Cut to 18 months, a dozen rejections, a letter from his psychiatrist and an educational advocate later, he was finally placed into what our school system calls the Resolve Program.
He showed up, sat in a classroom with other kids who were turning over desks, punching teachers (and sometimes students) and falling further behind. He was released at the end of the school year after "successfully completing" the program and referred back to his regular school.
*I should note here that despite the fact that he fails his state testing every single year, they move him onto the next grade regardless of readiness. He begins every school year struggling academically*
Now, in 5th grade (and two hospitalizations later), we are back to where we began. Except that this time, after several "unexcused absences" (because having multiple debilitating diagnoses isn't an excuse apparently) the school called CPS.
To be fair, the call to CPS wasn't just about the absences, but about the overall safety of Xander at home, as well as concerns for the safety of the rest of us. His team at school (with whom I requested a meeting to get some support regarding his fears about coming to school) suggested that CPS could fast track the many waiting lists we were on for services.
CPS came out to the house in September. It is now nearly mid-November. We have heard nothing back from them. So much for the "fast track."
Update: In December they closed our case. With no resources or further discussion.
When I recently went to the school 15 minutes prior to dismissal to sign Xander out for an appointment (he tends to have lots of these), I was met with hostility. The front desk lady (who knows who she is) informed me that the note I sent his teacher, as well as the email I sent out to the entire team informing them all that he would be leaving early, in no way excused this "absence" (again, 15 minutes before the regular dismissal time) and reminded me of all the other "unexcused" absences he had accumulated so early in the year.
I told her that while I'm sorry those remain "unexcused" according to school policy, they were unavoidable. She then told me that I needed to get it "straightened out" or there would be "consequences".
I did not care for this threat at all. I laughed and told her to feel free to call CPS again, collected my kid, and stormed out of the building fuming.
I received a letter from the school system shortly thereafter threatening me with family court. I am not kidding.
I emailed his entire team the angriest email I've ever written.
All I have been trying to do since this child was 3 years old is get him the help he needs to succeed in school.
His IQ is too high for the local school for children with special needs. Too low for residential programs that would otherwise take him. One program does not take kids who have Autism as their primary diagnosis (I never understand this one. What difference does it make if his Autism is at the top or the middle of the list?)
Another program will take kids with Autism, but not with other co-morbid conditions.
Also, every single one of those lists has endless obstacle courses parents must go through as well as years-long waiting lists.
We have tried homeschool (which, of course, our school system did not like at all because they called dibs on failing him), cyber school (no way can he sit at home for 6 hours a day at a desk. Seriously, he can't even do that at school). He is too volatile at home to effectively learn here. I cannot educate him alone without adequate resources. And yes, we have an IEP.
According to ACMH, "Nationally, only 40 percent of students with emotional, behavioral and mental health disorders graduate from high school, compared to the national average of 76 percent; 3 and, Over 50% of students with emotional and behavioral disabilities ages 14 and older, drop out of high school. This is the highest drop out rate of any disability group".
The American Psychological Association says "The committee found that the deinstitutionalization movement of the 1960s — which shut down large treatment facilities for the mentally ill — coupled with the lack of community resources to treat them, resulted in some people going to prisons and jails instead. One study found this trend accounts for about 7 percent of prison population growth from 1980 to 2000 — representing 40,000 to 72,000 people in prisons who would likely have been in mental hospitals in the past.
If these statistics applied to children with Diabetes, I feel like we'd have more options. More care would be taken. There is something about mental health in our society that demands less attention. It's not solely the fault of the teachers. After all, they are not psych nurses. And having worked in childcare myself, I am all too aware of the challenges a child with behavioral issues presents to the whole.
We claim "inclusion" for children with all kinds of differences, but we don't give them the tools they need to be successful in that inclusion, which results in simply being a body in a typically functioning classroom. This is not the same as being included.
My child cannot do 2 hours of homework every night. He just can't. He doesn't have it in him after a full day of trying to self-control to avoid embarrassment. He then comes home and explodes. Homework doesn't get done. He loses recess, his only chance during the day to get outside and release all that energy.
Rinse and repeat.
So, what to do?
The short answer is, have more therapeutic schools with different classroom ability levels, small class sizes, a school nurse with a psych background and a psychiatrist who visits a few times a week. Also, have these schools throughout so many parts of the country that no child is waiting years to get in.
But that solution requires money, better healthcare for at-risk children, more parent support, respite care, residential options....it requires the whole damn village.
I'd love to hear what your experiences are/were with your child's educational journey in the comments section here. And thank you for letting me rant my frustrations and taking the time to read them.
#AllTheRibbons
#Autism
#MentalHealth
#Education
#Wellness
#Advocacy
