What a Difference a Year (& a Budget Cut) Makes

Being a Mom 15

So I've sung the praises of our school district's special education and early intervention services quite a bit, haven't I? Sure, we've had some problems, some arguments, some skeptical looks shot across the conference table, but for the most part, our experiences have been primarily positive.

And that's generally the story I tell to parents I meet online and real life who ask for advice or guidance about what to do when they're standing with a new diagnosis in one hand and no real road map in the other.

I met a mother this past summer like that. Her child was 5 and newly labeled as PDD-NOS. They'd relocated from out of state, started new jobs, and had not yet settled on a permanent place to live. English was not her first language, and she had no idea where to start looking for help. Our kids ended up in the same summer camp class together, and I tried to give her a brief overview on dealing with the school district and who to call and what to expect at the evaluations.

I sensed that she was getting conflicting information from a bunch of different places, along with some bad assumptions about what services were actually available and how to go about qualifying for them, but I quickly figured out that our path into special ed at age 3 was completely different than the path for a 5-year-old, and that I could offer little "real" help myself. But that was okay, I assured her. Just get yourself in for an evaluation. Everything will fall into place after that, just like it did for us.

They got themselves in for an evaluation. She texted me the decision.

"He didn't qualify."

I was stunned. What? How could he not qualify? For anything? He's just like Noah! Almost exactly, only if Noah wasn't getting the help he gets! We didn't even have the PDD-NOS thing, officially, and we qualified! Did they not read the assessments and evaluations you already had? Did they not do X and did you say Y and what about Z?

There's an appeals process, of course, one that usually sends families to the offices of educational advocates and consultants and mediators to help them navigate and bolster their case. I collected names and phone numbers for her, as did some of the teachers from camp, but I could see the defeat in her eyes that conveyed exactly what she was already thinking: Screw them, I'll just send him to private school.

Maybe private school will be the right choice for her child. Lord knows we'd like to avoid the cost of it, but we'd never rule it out as a possibility if we found that the public school was no longer meeting Noah's needs.

But listening to HER experiences with the school district -- a team who clearly took advantage of a set of parents who were not prepared to argue or fight back, who disregarded previous written assessments and opinions, who were quick to wave off a child's struggles and delays as "immaturity" and put off responsibility for him until next year, MAYBE -- it's been an eye-opening, humbling experience.

I like my version of special education, where my child is surrounded by people who truly have his best interests at heart ... and not a budget-strapped bureaucracy struggling to keep student numbers down and hustle borderline kids out the door. I like thinking that if we meet at the IEP table with common goals and a reasonable amount of education on my part, we'll get what Noah needs with a minimum of drama or headaches.

I don't like thinking that wow, maybe we just got lucky.


autism, boys, developmental delays, nursery school, toddler development


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Jean Stimey Winegardner

I know what you mean. I mean, yeah, we had to hire an attorney at one point, but I don't feel that we've been bullied or taken advantage of. I feel like we have a team that respects us and what we're trying to do for our child. It is appalling that this isn't happening for all kids. The more stories I hear, the more depressing it is.

Steph... Stephensmom1214

Reading stories like this makes me realize how truly lucky we are too, to have a team that loves my son, and really wants him to succeed.  But I think they also know the lengths to which I will go to make sure he gets what he needs, and probably don't want to try me.  I agree, though, that it probably is easier to START in the "system" at 3 than it is to break in to it later.

hotic... hoticedcoffee

Any parent with a SN child who isn't struggling with their school should consider themselves very, very lucky.  I'm one of the lucky ones, too, but know of other parents in my surrounding towns who have to go head-to-head with their child's education team on a near-monthly basis.  I can't imagine having that battle regularly (or even once, really, since I've been so fortunate thus far) on top of the normal day-to-day struggles of parenting a SN child.  It's infuriating to think that there are schools where the staff works against the child.

Amy Elizabeth Yergen

I hate to say it, but I'm guessing you dind't get lucky at all. I'm guessing that you're white, and middle to upper middle class. You're not the kind of person who falls through the cracks. If this woman was new to the country, and struggling with English, they're less likely to even WANT to help her. Even in a multicultural place like where you live--don't you live in the DC metro area? Yeah, anyway, there are racists everywhere.

nonmember avatar Allboys

Wow, you are right Amy elizabeth there are racist everywhere and you just showed your true colors. OP: You probably didn't just get lucky but in a way did. I was speaking to a friend last night about my own son and I told her if it was my own issues I was dealing with I already would have simply given up. Yet since it is my own child I will fight and navigate and argue and never back down. The system in this country for SN kids is woefully inadequate and don't even get me started about the school system. We too have been strongly considering a drastic change to our lives in order to put our children in private school.

nonmember avatar Maureen

Once again, I find myself nodding furiously at your columns. We have had a WONDERFUL experience with our district's special education program. Like, more than we could ever hope for, with gifted teachers and caring administrators. We've also gotten everything we've asked for to help our son. Truly.

But I know of another mom whose son is just like mine, and maybe a bit lower functioning, who has had to fight every step of the way. Her experiences make me wonder if we are even in the same district, dealing with the same people. And it makes me both scratch my head and thank my lucky stars.

nonmember avatar Liz

I am someone who conducts early childhood special education evaluations for a living. I don't know anything about this child or the agency that evaluated him, so it could be true that some terrible politics were involved. However, I really want to convey to that most of us really do care and we try very hard to do comprehensive evaluations with every child. We always take medical reports into consideration, but the frustration for us is the difference between medical diagnosis and educational eligibility. They often don't translate well. Though many families do see fantastic medical professionals who provide great insight into their child's needs, we see just as many reports from physicians who spend an hour with a family and slap a label on a child that will follow that child around forever. Legally, we have to conduct our own evaluation and use our own data. It happens that kids who have some significant needs just don't quite make it in terms of the numbers we have to see in order to recommend eligibility legally. That's awful. It reflects a broken system. But to imply that because a child doesn't qualify we don't care, or that we're racist, or that we would deliberately not qualify an eligible child based on funding, that's painting with a pretty broad brush. I understand that it comes from a place of deep frustration which is every bit your right to feel. Just know that these didn't quite qualify children are the children that keep many of us up at night.

nonmember avatar lolismum

Good on you Liz, for commenting. My sister in law has the same job as you, students she cannot help do keep her up at night as well. So do obnoxious, ill-thought comments from people who don't know the details of an evaluation, the system, or a particular child's needs. One can moan about the system, help fix it, offer alternatives, but broadly calling those who conduct such evaluations and try to help the kids within that system racist or apathetic is extremely immature.

Statia Jamiol Manger

Wow, I'm upper middle class and white, and I fight every.single.day, for services for my son.   Race has  nothing to do with it. Especially when you live in a diverse metropolis.  Maybe in a more rural less diversified area, but I can't say, as I don't live in an area like that.   

I definitely think, given the overloaded nature of the IU systems around the country, that the district preys on people with little fight or knowledge of the system.   It's not right, and it's frustrating as hell, but the one thing I tell people is educate yourself, because you are their biggest advocate and you don't HAVE TO sign an IEP that you don't agree with.    The only way they won't fall through the cracks is if you fight for your child.   Because no one else is going to do it for you.   



TheMo... TheMousesNest

We're another family with a wonderful team in our school district.  I also know that certain things have become available (like a social skills group), because we went to our team and said, "He needs this" and it was documented in his original Asperger's diagnosis paperwork.


As a former private school teacher, I would NEVER send my Aspie to a private school unless it was specifically a school for special needs or services were spelled in a signed contract.  Private schools are not required to provide services in the same way as public schools.  I would hope to avoi it, but public schools have a legal requirement and one can force it to be fulfilled by taking the school district to court.  Private schools have no such obligation.

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