A Square Peg, A Round Hole

I just read a great article that gives a perfect summary of what FASD is.

It’s here: “The Invisible Havoc of Prenatal Alcohol Damage,” by Dr. Kathryn Page, published in The Journal of the Center for Families, Children, and the Courts, 2002.

It could have been written about my baby. It could have been written about my family.

If you are interested in FASD, think your child has been impacted by prenatal alcohol exposure, or KNOW your child has been impacted by prenatal alcohol exposure, are related to or friends with people parenting a child with FASD,  it’s worth a read.

So much of it applies to us.

This:

Children with FASD have a great many more needs,difficult for even the most energetic, skillful, and devoted parents to meet; the consequences of not meeting those needs are dramatic and destructive. Parents with less than optimal resources are likely to be caught in snowballing chaos and tension as their FASD children explode, don’t obey, don’t learn, don’t talk, and begin to act “bad.” Without therapists, respite care (trained child-care providers available to take over for hours or days at a time), support groups, medical insurance, or good schools, the parent of a child with FASD must contend alone with an incomprehensible and intense source of unpleasantness.

That part of the paper is about how people living in poverty don’t have access to those supports, but I can assure you, people living comfortably in the middle class with private health insurance don’t have access to those supports either. At least not where I live. It varies state by state, country by country, but in North Carolina, U.S. of A., a child with FASD, with borderline intelligence, with mood disorder NOS and PDD and ODD and ADHD whose parents make too much money to qualify for Medicaid may be able to find a support group, may be able to find a therapist for themselves, and hopefully lives in a school district that will work with them, but respite care? Ha ha. Nope. Our family, solidly middle class, makes waaaaaayyyyy too much money for respite care (and private insurance that middle income families like ours can afford certainly doesn’t pay for it), and even if my child were to be considered for the Medicaid waiver, the wait is 2-3 years long to qualify, and it’s frozen now anyway because of budget cuts. And personally, while I’ve found a therapist I like for myself, I haven’t found anyone who can get through to my little pumpkin, and our local school district didn’t give a SHIT when I presented them with all the psychoeducational testing we had done. Heck, they didn’t give a SHIT when their own standardized testing showed him at 2nd percentile for math and 6th for reading.  They were content with just sending notes home EVERY DAY about how badly my child was behaving.

But if you’ve read this blog I don’t need to rehash that same old story…

Back to the paper. Here’s more:

Several diagnoses jostle to explain what is actually one tapestry, albeit a wide and varied one, of dysfunction resulting from prenatal alcohol exposure. Attention deficit/hyperactivity disorder is the most common diagnosis given to children with FASD, with oppositional defiant disorder close behind. Bipolar disorder is also frequently diagnosed, as is sensory integration disorder. Attachment disorder is often diagnosed in children with FASD, even those who were adopted at birth. Exhausted and confused parents take their FASD children to clinician after clinician, looking for an explanation that fits their children, seeking treatment that might finally do the trick.

Yes. J’s first diagnosis was ADHD and ODD, and then we moved on to “mood disorder of a cyclical nature” (ummm, doesn’t that mean bipolar?), and sensory processing disorder, and while he’s never been dx’d with attachment disorders this is because I’ve never taken him to an attachment specialist. Clearly, he has attachment issues, especially when it comes to his mean old mama.

Here’s more:

Knowing—or even hypothesizing—the underlying cause of behavior problems to be prenatal alcohol damage gives the family, the clinician, and often the child a sense of relief, as this provides a context for the multitude of peculiar, even unfathomable,behaviors as well as the more categorical ones—theAD/HD and so on. Knowing that the child’s problematic behavior stems from a whole network of brain damage and not from deliberate disobedience (or just related to unitary sets of symptoms as described above) releases the family from its relentless and futile attempts to get the child to “just stop it.” Given resources that are well versed in brain damage, especially prenatal alcohol-related damage, the family can redirect its efforts toward teaching coping skills, changing the environment, and supporting the areas of strength.

Yes. This is why, people, you need to take your child to a FASD clinic. Even though I knew (in my head and in my heart) this was his issue for years, the diagnosis made it crystal clear. Once we stopped ascribing motive to our son’s behavior it changed our whole family dynamic. Doesn’t mean he’s let off the hook for doing unacceptable things (although we do try to keep his environment FASD friendly), but it means that HE is no longer bad. It’s not that he WON’T comply, it’s that he CAN’T.

At least we try to keep this in mind. Sometimes it’s very, very hard. Especially when he calls me a bitch at 6:00 in the morning and tries to kick me. Or when every single request or question (even the nice ones, like: Which movie to you want to go see? or Do you want a cookie? or Let’s decorate the Christmas tree) is met with resistance and rudeness. This is when calmness, control, and parental detachment come in handy. Or leaving the room.

Here’s more:

FASD may lead to behavior that manifests as ODD in youth. When a person can’tcommunicate his or her needs very well, can’t figure out the cues or feelings of others, doesn’t get the “big picture,” is often physically uncomfortable, does badly in school and at home, can’t organize or even remember tasks or materials—and has everybody yelling at him or her to just try harder—we have arecipe for resistance and defiance.

Yes, we do.

If there has been prenatal alcohol exposure, this cluster of symptoms [meaning pleasure from hurting those they love] may manifest as attachment disorder, but the roots of this disorder will be exacerbated by, if not solely a result of, organic brain damage. Without recognition of such organicity, treatment may be less successful or even backfire, as the lack of bonding would be understood to be of purely psychological origins and treated as such, ignoring any alcohol related aspects as mentioned above—frustrating for all participants in any such therapy.

This is a very important part of the paper. I’ve read several books on attachment, including one suggested by our FASD clinic, and I find the advice about how to connect with your attachment-challenged child completely counterintuitive when dealing with a person with organic brain damage. I actually find the advice harmful as it relies so much on consequences (natural or otherwise) for behaviors that the “experts” are assuming are under the child’s control. So much of what my child does that can “read” as attachment problems with a psychological reason behind them (and therefore potentially under his control) is actually a result of brain damage caused by fetal alcohol exposure. Assuming  that if only he were only attached to us (or wanted to be) he would stop the constant rudeness, fight-picking, etc., is like telling him that if he only WANTED to he’d be able to do double-digit subtraction. It’s not a WANT. It’s not under his control. It’s a CAN’T.

More:

The brain-based traits of inflexibility and explosiveness are particularly dangerous and often occur together, igniting an all-too-common response to frustration: “If at first you don’t succeed, throw that sucker across the room!” This behavior pattern, identifiable in early childhood, does not lead inevitably to a lifetime of violence, but it certainly makes thoughtful, productive responses less likely.Good parenting in the face of such habitual reactions, especially parenting a frustrating and difficult child, becomes impossible.

Thank you, Dr. Page.

Children with prenatal alcohol exposure are difficult for anyone to raise, as well-prepared adoptive parents attest. A child who is quick to get upset, slow to obey, impossible to calm or console, generally complaining about some discomfort or other, and often sick would be hard enough to tend without the rage disorders, lying, or inability to read social cues,remember yesterday’s learning, or express needs. These children rarely reflect back the calm, happy, interactive impression of a well-cared-for child even with the best parenting. This makes it very difficult to keep the bonding cycle going—if indeed it ever began.

Sigh. All true.

Adoptive parents raising children diagnosed with FAS/E report significant depression, exhaustion, and anxiety. When these desperate parents seek professional advice, clinicians almost invariably suggest another parenting class or chore charts with gold-star stickers.

Oh. My. God. Sticker chart. I can’t even talk to you about sticker chart.

The rest of the paper talks about the future for our kids and different programs that have worked to help. It’s scary for me to think about the future, honestly. I know that those of you parenting kids with FASD know what I’m talking about. If my child’s development is never going to progress past the level of early adolescence, how will he ever live on his own? If his IQ, at 6 pts above MR, is too high for him to be classified as Developmental Delayed, will he really be expected to make his own living? Will he be living with us, still calling me a bitch and making giant messes in my home, when he’s 45 and I’m 80? Or will he run away when he’s legally an adult (but mentally an 8 year old) and become a drug addict and father babies with women who themselves are drug and alcohol addicts?

I know those are really horrible things to write. But they’re my real fears. And please don’t tell me that bad things can happen to all children, or that GOOD PARENTING will solve these problems. Because when it comes to kids with FASD, good parenting helps, but in the end I think it just becomes this: we did the best we could. Which I guess is all you can do.

In public school my child’s behavior wasn’t something they were willing to give him extra help to address (except to send notes home to me every day)…but the private school we just applied to says his needs are far too great for them to handle. Hmm…

Thank the goddess there’s still homeschooling. Seriously. Since applying for that private school I’ve thought a lot about what Little J needs and what I need and what my family needs and what we can afford and although I didn’t actually consider they’d reject his application, I wasn’t 100% convinced it’d be the best move for us. But now that decision is out of my hands, which is okay, strangely enough.

But still, the irony doesn’t escape me. The public schools, when given that exact same report (and sending home bad behavior notes day after day) said meh – whatever. But the private school – a school for kids with various behavior issues, by the way, just not the same behavior issues as my son’s, I guess, were like: no f*cking way when they saw the same psychological report.

Ha. In a weird way I feel a little vindicated.

Penny’s post on A Mom’s View of ADHD: ADHD and Hope.

Here’s the crux of it:

Those outside our ADHD community are ignorant about ADHD and I can’t seem to change that. The mainstream medical approach to ADHD is trial and error on my sweet kid rather than digging to find out causes and affect real change. And the schools… well, the school system is over-politicized and under-humanized. They can’t just see a child struggle and do what’s necessary to help them. The schools require a fight (to my death) to help a struggling child and, even then, it’s never enough… it’s never what they really need.

This applies not just to kids with ADHD, but kids with any kind of ‘invisible’ disability that impacts learning and behavior. My son, who entered his elementary school with a set of diagnoses several pages long, documentation to guide teachers and administrators on how to deal with him in a way that would help him learn, was repeatedly told to “just sit down and shut up” by the school administration when sent to the office for behavior problems (reported to me by my child, so the exact wording may be off, but I think the intent was there.)

As if!

And their solution to my child’s inability to sit down and shut up was to put him in a near-empty classroom the first hour and a half of the morning so he could settle down. This, so he wouldn’t bother other children and so his experiences in his regular classroom would be only positive ones. Apparently the powers-that-be had noticed that the other kids didn’t like it when he bothered them.

And we fought…and we lost. Or at least we lost our request for him to get an I.E.P., which may or may not have helped much at all, in retrospect. I don’t know what they could have (or would have) done for him that would have really helped. He needed a 1-1 aide. That was not about to happen.

But what can be done? What can parents like me, and Penny, and the million other parents out there whose schools are failing their children do? I know that most school systems are concerned about drop-out rates and try elaborate schemes focused on kids in high school to try to prevent them from dropping out, but I think they need to start WAY earlier: look at the early elementary school kids and see how they can support those kids better. I can guarantee that had Little J stayed in school his issues would have only gotten worse, and he would have been one of those eventual drop-outs.

The Us vs. Them attitude that happens in most schools between teachers and parents also has to stop. I’ve worked in schools and I KNOW how teachers talk about parents. It’s very dismissive. It’s not collaborative. If there’s a problem with the child it is probably due to poor parenting. If there’s a success it’s because the teacher is great. If parents push for their children’s rights they are being a pain in the ass and not respecting the teacher as professional. If teachers and parents meet and parents get upset, then that parent is a problem parent. Children in school are spoken of as ‘belonging’ to the teachers. Parents who help at school and volunteer are those who are listened to. Parents who are working 2 jobs to feed their children and so can’t volunteer are slackers or unsupportive. Parents who don’t take their children to be tested for ADHD are negligent, but those like me, who do everything right, are treated like shit because we’re overstepping our bounds. Parents who ask for lots of meetings are being needy and smothering their children and don’t they know I have a lot of work to do and not enough time to do it?

I know that sounds like a rant. It is, but it is also based in truth. I have 15 years in education, the last 3 in elementary school, and I am reporting the actual attitude of many of the people I worked with. Not all. Absolutely not all. But many, and most.

I know teachers have a hard job. I know it. I’m not trying to throw the profession under the bus. But it’s like Penny said: the system is over-politicized and under-humanized, and that doesn’t help anyone. Teachers are probably caught up in it as much as parents and kids are – I sincerely doubt caring individuals decide to become special education teachers to deny services. It’s the opposite of that, in fact. And I also don’t think that any of this is going to change any time soon – not with outside pressures of testing and accountability and people getting laid off and salaries tied to testing and RTI, which puts the burden on identification and intervention almost entirely on the classroom teacher, who has already had her class increased and her salary cut and her assistant lost and I could go on and on and on…

Meanwhile, our kids are caught up in it. And they’re lost.

I volunteer at my older son’s school library once a week. I like school libraries. It’s really one of the only places in the school where kids have freedom of choice (at least in theory) and the school librarian can be a good adult contact for kids who don’t connect with their classroom teachers. I used to be a school librarian up until last June (although it seems like much longer) and our school district cut all the library assistants – the people who did the shelving and book processing while the librarians worked with kids and taught classes. Now the librarians have to work with kids, teach classes, and shelve and process all the books. It’s a lot. So once a week or so I come and help shelve or process books or just talk to the wonderful librarian here. Little J comes with me and our librarian friend thinks up ways he can “help” as well.

But today I got to the library and the librarian was not in the library. So I figured I’d just shelve books and wait for her to show up. Only problem is that there was an IEP meeting going on in the library – out in public, where this volunteer, random kids, and whoever walks through can hear and see.

If I were the mama in the meeting I’d feel a little uncomfortable talking about my child’s business out in public.

But before I realized it was an IEP meeting I went about shelving books and of course I couldn’t help but overhear. It’s an end-of-the-year IEP meeting, so the special education teacher is telling the mother what they recommend for next year. I’m sure the mother was summoned with the words ‘we’ll meet to discuss…” but it wasn’t a discussion. They’re telling her what they’re going to do.

Now, after they read the 2 page document TO her (this is so stupid; wouldn’t it make sense to send it to her ahead of time to review so she could come with questions and comments, instead of reading the thing to her right on the spot?) they asked if she had any input.

This is when I really wished I wasn’t there, and in fact I finished shelving the few books I’d pulled as fast as possible so I could get out of that woman’s personal discussion. What I heard while I was finishing up was a very sad, very stressed mama indeed. She sounded beaten down. Helpless. Hopeless. She said her son worked very hard, but struggled and struggled. She said he had great test anxiety and she wished they could find a way to help him deal with it.

The special ed. teacher typed the mom’s feedback into her computer, read it out loud, then asked: anything else?

No attempt to come up with strategies to help with test anxiety.

No praise for her son, who was working so hard (a classroom teacher was present as well).

No sympathy for the obviously upset mother.

Then they signed the papers. The end.

~~~~~~~~~~~~~~~~~~~~

I really don’t understand why IEP meetings need to go down this way. I’ll be honest: besides the one we requested for my son and a handful of other meetings I sat in on when I worked in high schools – where the kids were present and there actually was much more rapport between the families and the teachers/administrators involved – this is the only other IEP meeting I’ve been at. Is this the way it is everywhere? Do they read the decision to the parent/family without even involving the parent in the discussion? Then do they simply ignore the human sitting in front of them – make note of the questions and comments (which they didn’t do at our IEP meeting, actually – I said lots of things that they didn’t write down, so I guess the one I just eavesdropped on is an improvement) – but don’t provide or help think of solutions because it’s something the PARENT thinks is an issue, not the school? I know I’m biased in this because that’s how I perceive our IEP request went down – that they denied him and lied and were dishonest about what he could and couldn’t do because I initiated things. I have no other explanation. And maybe that’s not why they didn’t respond to her. Maybe the emphasis on testing makes all kids anxious and being scared of school is something that comes with the territory these days…I don’t know. I do know one answer to all the stress and heartache, however: homeschool.

 

I’m a contributor to A Mom’s View of ADHD, a great blog full of collective wisdom about parenting and ADHD. Someone I know from the site is very upset about the situation at her child’s school. Her son has ADHD and is LD for writing and she has been trying and trying to get the school to help him out…and for every step forward there seems to be an even bigger step backwards.

Her child is feeling the stress. This last report card was the worst one they’ve ever seen, yet the mom feels like she’s been trying the hardest she’s ever tried to get him help.

Communication with the school seems to be breaking down. The various factions are circling their wagons, including my friend. Everyone is feeling defensive. My friend feels like no one is listening to her, no one is letting her know what is going on, and no one wants the best for her son. The school, I’m guessing, feels like my friend is being unreasonable and may be overreacting. They have limited resources and they’re doing the best that they can. I suspect there are a few of them who feel that ADHD or dysgraphia isn’t a real disorder – or at least a minor one compared to the seriously disabled children they see on an everyday basis. Because my friend is upset, informed, and assertive they may also be in cover-your-ass mode. Maybe. I don’t know. I don’t want to speak for the school personnel. Suffice it to say that the process isn’t going as smoothly as one would hope.

Sadly, this is a very familiar situation to me. One day soon I’ll write out the full saga of the experiences that lead us to homeschool, but suffice it to say that I found the harder I pushed the school…the harder they pushed back. Once defenses were up there was no working with them. Cover-your-ass mode was so ridiculously apparent at one point that all respect I had for any of the people involved disappeared from that moment forward.I hope that this will not be the case with my friend, but in our case the pushback created a very deep distrust in my for the school system (a school system, by the way, which I worked for). And even though my son’s next school year was much improved I was so disgusted by the way the system (doesn’t) work that it contributed to me quitting my job (there were lots of other things at work) and eventually led to us pulling our child out to homeschool.

I don’t think that homeschooling is the right decision for everyone, but it is working for us so far. Well enough so that I’m considering pulling my extremely neurotypical, get-along, AIG 11-year old out next year as well. The system is broke and with what’s coming down the pike re: budget cuts, increased testing as well as constant test prep, lack of rigor for high achieving kids, as well as other circumstances guaranteed to stress even the best teachers and schools, I don’t know how I could think otherwise.

Anyway, soapbox aside, this is what I wrote to her:

Dear SUPER GREAT ADHD MOM FRIEND:

I totally get where you’re coming from. I understand how infuriating, worrying, frustrating, and paralyzing the whole thing can make you feel. That’s basically why we decided to homeschool Little J…but guess what? I still feel pretty infuriated, worried, and frustrated! I think it just comes with the territory: my child! But we’re also way more relaxed at home and although I am still astonished how the school wouldn’t recognize my child’s issues (handwriting, writing, and math) in what I felt was a timely fashion, I am discovering that his reading is a lot better than I thought AND I’m able to conquer some of his specific behaviors that kept him from accomplishing anything in class.

• He is happier.
• We have gone from screaming fits/swearing/angry breakdowns 5-6x/day to maybe 2x/week (not counting weekends – when he and his brother are together all bets are off).
• He is able to identify some of the problems he had at school (“I was frustrated when the teacher gave me work that I couldn’t do,” “I would hide my papers or walk around the room when I didn’t think I could do something,” etc.)
• A lot of the sassy mouth stuff is gone. We didn’t realize it but much of his bad attitude was from mimicking the kids from school.

Which is not to say you should homeschool. I totally understand your objections, although I don’t think you should worry that you couldn’t do it – I know you could, and I also don’t think it is a 24/7 life sentence to being in the house with your kid. Between enrichment, field trips, Grandma cooking class, volunteering, OT, etc. we have not been home 3 days in a row since we started 3 weeks ago. And even though we spend no more than 1 1/2 hours on “seat work”/day he is producing tons more than he did in school – no distractions, no social pressures, I can adjust the work to where he actually is and follow his interests, etc. He spends a lot of the day outside, a lot of the day on projects, and has discovered a newfound interest listening to recorded books. I’ve had lots of doubts about this and I’ve felt a lot of frustration, but I think it was the right decision for us for right now. Maybe not forever, but we’ll see.

That said, it’s also been really, really difficult when I’ve had to work. My schedule is usually flexible, which has helped, but some things are not flexible and I am having trouble with that kind of thing. From what I know re: my friends (who do the same kind of job as you), this could be very difficult for you and I think that’s a very valid reason to look at other options first.

Here’s the question I think you should ask yourself in regards to what you want from school, the special education team, and his IEP:

In a perfect world, what do you want the school to do?
Given the reality of SCHOOL (not only your child’s school), do you think they will ever do it?

In our case I knew that the only way Little J would be able to learn in a regular classroom would be to have a 1-1 aide. Not only does he have various learning problems/executive functioning issues and a poor working memory (as well as some other issues), but over the past 2 years he developed several extremely effective and now deeply ingrained strategies to avoid demonstrating what he didn’t know – like destroying his work, tantruming, complaining, throwing up (!), simply refusing, hiding (his body, his papers, his books), etc. The only time he did any classwork in 1st or 2nd grade was when his teacher’s assistant was sitting right next to him. I knew the only way he’d ever get the 1-1 aide would be to fall very, very far behind and burn through every accommodation/intervention they would throw at him…and that this would take years of frustration and failure on his part to accomplish. We decided that we weren’t willing to wait for that.

So we pulled him.

Should you pull your son? I don’t know. It depends how frustrated you get and how well you think you could handle it. You could try it and see how it goes. It won’t be forever. Or you could keep fighting. Good luck with that. Some people are successful in getting their kids the help they need…but I didn’t want to wait to find out.

My son was 8 years old and halfway through the 2nd grade when we pulled him out to homeschool. One area where he was lagging, and the only area that the school acknowledged was an issue for him when we pulled him, was handwriting. His handwriting, on a good day, is barely legible. On a bad day it is useless scribble. It is very hard for him to write and it makes him angry and frustrated. He gets weekly occupational therapy (private – despite OT evals explaining his coordination and trunk strength issues the school didn’t recognize his issues as something they should help with) to address his handwriting issues, and every day in our homeschool he is doing some kind of writing practice. One of the brain integration therapies we are doing together addresses handwriting, specifically. He often reverses any letter that’s reversable, including letters in his own name.

And yet…

when he was in school he was considered only a tiny bit behind in writing.

Only a tiny bit!

This is because “writing” is not “handwriting” and shouldn’t be confused with such. “Writing” means sentence formation and variety in vocabulary and whether or not your written answer matches the prompt they gave. Which, in Little J’s case, it did, kind of, once he got help. In order to assess him his teacher would have him dictate the answer to the writing prompt while she wrote it down, then he would copy what she wrote so that it could be assessed. She broke out the writing process from the process of handwriting. And since my boy has a very nice vocabulary (because he’s a smart guy, his parents, grandparents, and brother all have a good vocabulary, and he has been read to almost every single night since he arrived in our house, plus his television time is strictly limited) and also is surrounded by people who speak proper English, plus he has a keen sense of story and narrative and detail, the “writing process” part of the writing always scored very high marks.

Nice, right? Except that since she assessed him using this accommodation and he would pass the writing assessment, there was no official indication that he had a problem in writing. This is an issue because no official indication of a problem (a poor assessment) meant that no official accommodation would be made. So it didn’t go in his 504 plan and didn’t contribute evidence towards the need for an IEP.

Which of course begs these questions: what would happen when the next teacher met him? Or when he was in a class with no teacher’s assistant? Or the next teacher needed an accommodation written down before she would consider doing it?

Makes sense, no? No.

If left to his own devices my child would have flunked his writing assessments. It wouldn’t only have been the problem of not being able to read his writing, but writing is so difficult and causes such frustration, that instead of the 8-9 sentences he told her verbally, he would have given a 2 sentence response, if that. More likely a 2-word response, if his homework and in-class writing samples give any indication. If you go here, to this site of scoring examples for the Indiana writing test, and scroll down to example 8, you’ll see a bit of work by a child who scores below grade level. Now, we’re not in Indiana but since I was trained on the NC writing assessment about 4 years ago I know that it is very similar. Same criteria, same things we look for. My child, if given the assessment on his own, would not have scored as well as child #8 in the Indiana scoring guide who is below grade level even if the assessor could get beyond the handwriting issue. He wouldn’t have been close.

Here’s another example, this one from the Bakersfield City Schools 2nd grade writing assessment guidelines. Scroll all the way to the bottom to see something my son might have written without the teacher’s help. Bakersfield City Schools would have given my son a “1″ out of “4″ – 3 being at grade level. But with accommodations like those his 2nd grade teacher supplied, he consistently scored a “3″ or high “2″.

I loved Little J’s second grade teacher and I really appreciated that she was trying to help him succeed, but this type of accommodation (plus the “accommodations” his 1st grade teacher made by letting him do whatever the hell he wanted to all year long) seems like it delays the school’s responsibility for real interventions further than it should. I felt that my child needed special help. His teachers gave him special help. But the help (some good, some bad) they gave him wasn’t official, plus it invalidated the assessments they gave that were supposed to indicate a need for help.

I really don’t get it. Can someone please explain how the system is supposed to work?