When 'Free and Appropriate Education' Didn't Apply to My Son With Special Needs

For the last few years, professionals have been telling me my son is “complex.” I get it. The mixture of brain damage caused by fetal alcohol spectrum disorder and bipolar disorder confuses me, too. But when there hasn’t been progress in the four years he’s been in public school, I have to start questioning them.

My son is going into fourth grade and he can’t read. Like, at all. Like, he’s still in pre-K for reading skills. The school tells me it’s where he is developmentally. But having some of the same goals as he did in Kindergarten doesn’t seem very “appropriate” to me.

So, like most concerned parents, I started digging deeper. Let me be clear. I support teachers and staff. I know they work hard and they love kids. I don’t blame them for my son slipping through the cracks. They are bound by flaws in a larger system.

When I started to question my son’s lack of progress, I was shown “proof” in the form of work he’d created. At first glance, it was impressive. The 9-year-old who couldn’t even identify all his letters at home had apparently written a whole sentence at school by himself.

Thank God for my detail-oriented husband who looked closer. There were four words. I can’t remember what they were so I’m going to make something up as an example:

“I see a crab.”

My husband asked, “So he knew how to spell the word ‘see’?”

The teacher averted her gaze. “Well, no. We helped him with that one.”

I looked at the top of the paper and realized the vocabulary word for the day was “crab” and there it was spelled out right on the page. So his teacher helped him write “see” and he copied the word “crab.” So the words he’d written in that sentence were “I” and “A.”

He’d spelled two one-letter words by himself. And I’m supposed to be impressed by this? This is their idea of progress?

The huge lack of academic progress was one problem. The other was his behavior. They “managed” him at school, which basically meant they tiptoed around him so he didn’t explode. The public school isn’t equipped to handle kids with behavioral issues. When he did have meltdowns, they called me to pick him up. I grew tired of this after the first couple times and told them if they couldn’t handle him, they’d have to find a school that could. I didn’t hear a peep after that.

Concerned our child was heading down the path to illiteracy, and potentially prison, we called an attorney. She took one look at his file and said, “What the heck have they been doing?”

The fact that he’d been physically restrained six times at school and there’d been no FBA (functional behavior analysis) or BCBA (Board Certified Behavior Analyst) involvement was a huge oversight. The attorney said he needed comprehensive evaluations done so we’d know his potential and the best way to teach him.

So the monthly Planning and Placement Team meetings started, and we tried to figure out the best school programming. We pushed for outside independent evaluations, pushed for a better summer program and eventually pushed for outplacement to a specialized school that could handle his behavior and severe learning disabilities.

As you can guess, lawyers are expensive. First I drained my savings account. Then I had to borrow money from family. And now we’re looking at getting a bank loan.

So where is this “free and appropriate education” I’m promised? It cost me $10,000 just to get the evaluations we need to understand how he learns and an adequate summer program. How is that free?

I’m angry.

I’m angry I can’t afford a family vacation this summer, that we had to cancel Friday pizza night and that my husband and I can’t even go on a date. And all for the very basic things my son needs to learn. All for him to know the difference between a consonant and a vowel.

If we didn’t look closely at his education program, he would’ve gone on like this, unable to read, not getting his sensory needs met, barely skating by in public school.

He deserves better. And according to the law, I shouldn’t have to pay thousands of dollars for the bare minimum.

And what about all the kids in the special education system whose families can’t afford a lawyer? We’re middle class and we can’t even afford it. We’re willing to go into debt for it, but what about those who can’t?”

It’s not fair the most vulnerable members of society are the ones who are overlooked, slip through the cracks, require court battles and legal fees to get their fair share of education. Where’s the equality now?

I guess “free and appropriate education” doesn’t apply to my son.

Follow this journey on A Phoenix From the Ashes.

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