Options for IEP and 504 kids who are still failing…

Life for us is a mad scramble, every day the same but different.  Again, other parents drop their kid at the school gates and kiss them goodbye until 3 pm; whereupon they pick up their dysregulated, tired but usually happy, child.  I on the other hand drop my kid off at 8.20 and run home, jump in the shower and wait patiently for the phone to ring. Sometimes we actually make it to his allotted pick up time of 11.35 am but more than once the phone has rung around 10.30 with a “Mrs… please come and pick your son up, he is in the office blah blah blah”  It is not yet 4 weeks into the school year and we have already had an agreement for early dismissal, 2 earlier picks ups and 1 afternoon suspension. I feel for them, I really do. Because I screwed up and got frustrated with his first round of public schooling and placed him in a private school to try to minimize the impact of life (subsequently home schooling for the 4th grade), his IEP went dormant.  Fat lot of good that one was anyway.

Regardless, I should have fought harder for what he needed, but instead I was ignorant and we left, tail between our legs to find some other kind of educational torture and torture we found, oh yes we did.  Now we are back on the public school treadmill, his IEP is in the works but until then he is dismissed at 11.35 am, simply as he can cope no longer than that.  My son has some pretty unique behavioral issues. Apparently he is an enigma, dismissed from more therapists and programs with no better skills than he went in, we are all feeling more than disheartened at this point. We have sought out more professional help than any other person I know, we have begged and pleaded for help. We have tried every single thing that comes around and in the meantime attempt to parent in the therapeutic model ourselves at home.  We are a crisis waiting to happen.  Our son is on the cusp, we either find something that works NOW or we resign ourselves to the fact that we are throwing us and all who come upon us, to the wolves.  Maybe he will succeed without intervention, maybe he will succeed through sheer will power, prayers and good grace, but I fear the opposite is true.

He is neither a sociopath nor a psychopath, he is not homicidal nor does he bare ill-will on anyone around him.  He internalizes everything. His fear, shame and loathing of his own self inhabits his every thought. At school he is on high alert and living constantly in his lower brain, unable to move upwards for any significant amount of time to regulate himself at school.  The suspension incident came about when a “surprise” fire truck showing was arranged for his class. He went to the playground with his class and from there on in, fell to pieces, which for him means oppositional behavior, talking back, meanness to and about others, just general disrespect and then, joy of joy he starts running. Now, I have lived with this long enough to know this is not defiance this is pure and unadulterated terror and fear but to every single person not well versed in trauma this is out and out, get out the belt, take that kid down, disrespect behavior. Thankfully, the principle is a calm, composed lady and even though she was unsure of what to do, she instinctively did not chase, belittle or shout at him. She calmly asked him to return and told him that she would have to call the police if he ran as it was a safety situation and if he came back she could call me. He finally did calm down and go to the office to wait for me.

With all the best will in the world, this child should not be in this type of school!  No teacher, principle or layperson is, or should have to be, trained to deal with our son’s vast array of coping techniques.

So what are our options?:

1.  There is a therapeutic tier III school in the district next to ours.  We recently discovered this fact.  Well can’t we send him there we wonder?  No! Here’s why.  First and foremost he must not be on an IEP (check – as ours is neither signed, sealed nor delivered currently. I personally considered this a mute point but apparently it’s just a technicality and they consider him under an IEP).  Secondly we do not attend a school or live in that district and are unable to do so unless we move and thirdly, even if we move (which believe me we considered), he would still need to be referred and then be accepted to that program.  Lots of if’s and’s and but’s, a veritable smorgasbord of hoops to jump through if we chose to go that route.

2.  How about private school? Simply no private school close to us is able to accept his level of coping skills again, no matter how much we pay.  Regardless even if we found someone who could take us for tuition based schooling, we are now flat broke. Actually for other folks who pay taxes in SC (we pay the bulk of our taxes in NC), there is a scholarship for a child who has an IEP within 3 years and is failing in public school to attend one of the participating private schools in the program.  It is a $10,000 tax credit and can be applied for relatively easily with the school mentioned online.  You can read about that here. You’re welcome 😀

3.  Home school – while that was an option and I guess maybe still is, he needs far more support than even we can give him at home. He needs peer support and relationships and he needs to be where we can at least try to get him help. We need access to school based help, as again, our personal funding has been drastically reduced (we literally have cashed out every single thing that we have been able to to pay for the treatments required so far). Keeping him locked up at home helps no one, realistically we have to accept that there will come a point where we will die or be incapacitated and then who will take care of a kid that we made totally dependent on us. We gave homeschooling a really good try, including trying home-school groups, events, classes and the like but just like everything else in life, he is too stressed to participate in almost anything.

4.  So we are left with – Therapeutic residential boarding schools and/or a treatment center geared precisely to neurological reorganization and managing coping techniques, treatments focused on retraining his brain to think differently, consistent therapeutic management to get those bypassed connections to reconnect and subsequently turn down the fire in his brain. These places exist and they have space available and they are totally 100% geared toward a child such as ours, excited yet? However, the average cost is about $15,000 a month for this level of residential care. Of course, right now, we do not have close to the $180,000 needed to almost cover just the first year of treatment and it will probably take longer than that anyway, we are looking closer to maybe up to 2 years. So how can we pay that? How have other folks made it work?  Well for us, Medicaid here will not cover out of state and the 2 programs that offer the most promise are located far from here.  Insurance will cover minimal amounts of time and money for one of the choices but a partial payment for 3 months isn’t really going to help much in the long run.  School districts here do not pay, regardless of the circumstances, precedence has been set just in basic classroom directives or rather the lack of and the school district wins every time.  So this, while the best option, really in the end is no option at all, just a dangling carrot of nah nah you can’t do this even though we KNOW this is where he needs to be.

and finally:

5.  Keep doing what we are doing. Maximize the IEP and hope against hope we either win the lottery or he suddenly and magically does not require treatment for his adoption trauma based brain dysfunction. Neither the 1st, 2nd or 3rd choice is really a choice, our best wish is #4 magically becomes possible, but sadly for us all, right now #5 is all we have.

So that’s what we will do! Struggle on, missing school, managing melt downs, spending every penny we have on therapies that don’t work but at least if we keep going, we feel like we are trying. We could always medicate him (or perhaps us) to oblivion knowing that as soon as he turns 18 he will refuse any and all medication and then at that point, will probably have zero coping skills needed to move forwards.  It makes me ponder – what is the cost of sending a person through the jail system time after time might be.  How much is a public defender, jail housing, rehabilitation? How much does that cost the state in the end? Is it more than the $300,000 we probably will need I wonder? Do any of the other options have a chance to produce a moral, fine, upstanding, motivated citizen at the end of it?  Does it save a life? Or lives? Is it not worth trying at least to save our son from this kind of life, the life that comes with mental deficiencies, life that we already see discarded on the street holding a sign begging for money, a squatter living a life of drug and alcohol abuse, even a person who is considered a “functioning” alcoholic or drug addict.  Really in the end, does anyone care?  Is it not worth the time or money to be proactive rather than reactive?  We are not, can not be the only people in this situation, surely we are not. Although some families are luckier that they live in the school districts or states that will go above and beyond for their kids, that will fund programs and alternative schools, and if that fails they will fund the therapeutic boarding school option. These families live in states that seem to recognize proactive is better. They have programs and are willing to allow the families to use them. Not so where we live which is no one’s fault but our own.  The irony is we came here for the great school district, even now people are still moving here for the great schools, it’s only families like ours that suddenly find themselves in a nightmare of talk but no action, money but no funding for what their kids need. We could move of course and in the end, sadly that’s probably what we will have to do. The problem isn’t going away though just because we leave, there are families right behind us with the same rotten choices and dilemmas, the same shuffling, the same lack of assistance. I am hoping in the end we beat the odds and say, “Thank you God for presenting an opportunity to get us the help we needed, the right place at the right time” if nothing else it’s a little overdue right now!