Dec 13

It’s about the money, honey. Balancing your child’s special needs, therapies, possible solutions and the whole family’s budget. How do you do it?

When we got our son’s FASD diagnosis early this fall, we received a list of suggested therapies and treatments from the clinic. I’m summarizing, but basically they were as follows: neurofeedback, behavioral therapy, an alternative school solution, occupational therapy, speech therapy to work on receptive language, and whole-family intensive in-home therapy.

The only things on this list covered by our insurance (which is a high-deductible plan that we pay privately for, as we are self-employed) are 20 sessions of OT or Speech, and 20 sessions ofpsychotherapy. The clinics that offer the types of behavioral therapy the clinic recommended are not in-network on our plan, and intensive in-home is not covered at all. Our local mental health/dd agency cannot help us at all since we already have health insurance and our income is too high to qualify for aid. We applied for a waiver based on our son’s developmental delays but all funding is frozen and it’s likely that even when it’s unfrozen we will not qualify when our case is reviewed…so we’ll have to appeal. Which means a lawyer.  Which means $. Which basically means my son *might* qualify when he’s too old to be a minor. This will help him as a DD adult, but will not help our family right now.

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Apr 04

Homeschooling, or why school didn’t work for us, part 2

Here’s part 1 of “Why school didn’t work for us”

The vomiting, weight loss, and freaking/tweaking behavior can’t go on. Even if it means the child can sit at his desk and do his work. So parents make the only choice they can make at that point: they pull him from school.

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No doubt you’ve guessed it by now: this is our story. It’s  why we decided to homeschool. Our backs were against the wall and for our child’s sanity and our own we didn’t feel that we had any other choice. Yes, we could have stayed and worked with the wonderful, calm, experienced, organized teacher and eventually worked something out. We know she knew there were problems. But the wheels turn so slowly in our school system…and we couldn’t wait for that. Our problem was immediate. We weren’t willing to wait 2 years for him to be more than 2 years behind. And for what? An hour a day with the resource room teacher? Everyone knowing he couldn’t do what the other kids were doing? Kids picking on him (because oh yeah, did I happen to mention he was the class ‘loser’?). Constant anger, frustration, and disappointment?

Nope, we had no other choice.

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I could probably write a BOOK about what’s happened to our family in the few short years we’ve been involved with public school as parents (and more as me as teacher-librarian). The system mostly fails kids like mine (and maybe yours) and it seems as though for every person who feels happy with how their child’s school deals with his or her disabilities there are 20 that are miserable.  I know that parents of ‘average’ children often feel the same way; now that we’ve pulled Little J from school his older brother, a very successful middle-school student, will follow him next year. Now that we’ve tried it we’ve seen how well it can work (for them; for me it’s often very difficult I have to admit)

I have great hopes for how homeschooling – or some other (future) form of alternative schooling – will solve many of our son’s problems with learning. I’m happy to report that in the 2 months he’s been home his reading has increased by a grade level and just today we played a game that involved counting money!  Some days have been incredibly hard: because he either couldn’t do the work because he didn’t have the skills, or was anxious about the work, or couldn’t attend long enough to accomplish the work (and probably a combination of all 3), he developed many behaviors to avoid doing the work. This has been a constant battle, but one which I know we’ll overcome.

I have a blog about our homeschooling journey that is filled with a lot of posts about muddling through. I need to get better about updating it(especially if I ever hope to write the aforementioned book), and I’ve written about it on A Mom’s View of ADHD as well, specifically in this post: “When Winter Break Lasts Forever: Why We’ve Decided to HomeSchool our ADHD child” and “Would you, could you, homeschool your ADHD child?” which I wrote back when we were trying to figure it all out. Please have a read if you’re interested or if our story rings true. And share your own story – either here or on Facebook.  I know this is a constant struggle for anyone raising a child with special needs.

 

Adrienne Ehlert Bashista lives in central North Carolina with her husband and 2 boys, ages 8 and 11. She is a contributor and co-editor to Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. To read all of Adrienne’s posts on this blog, please click here.

 

 

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Apr 04

Homeschooling, or Why School Didn’t Work for Us

Here’s the story: child, 8 years old, diagnosed ADHD and developmentally delayed/socially delayed, with up-to-date Occupational Therapy assessments stating small motor, trunk strength, and coordination deficits, as well as past diagnoses of SPD, ODD (although those behaviors are related to probably frustration at his limitations instead of him being just plain old oppositional), a recent IQ test stating that he has serious deficits in working memory and math, and a school history that includes In School Suspensions, a 504 plan, constant notes home to mom and dad about behavior, ways of  dealing with behavior issues that included sitting him the corner, letting him play games and search randomly on the computer all day, having him “earn” rewards by staying on task in 15-minute increments, the inability to complete homework, the inability to demonstrate to mom, dad, and a neuropsychologist that he’s at the grade level that his teachers’ report him at, and day after day after day of screaming and tantruming and weeping after school in first couple months of each school year.

Whew! Take a breath, y’all. There’s more.

And when the parents request a meeting with the principal they are denied. And when they request an I.E.P. so their child can get some written-down accommodations that the school has to put into effect (because the 504 plan, although written down, seemingly has no real meaning to some of the teachers assigned to our child) it is denied.

Denied.

Because once the I.E.P. is requested the daily notes about behavior stop coming home. And although yes, there is a medication change, our child’s behavioral change is ascribed to the behavior plan that lets him earn rewards by staying on task in 15 minute increments.  And the teacher claims that our child – the child who had behavior notes sent home for 2 straight months, who cannot read at grade level when his mother (a teacher-librarian at another school) administers a reading test, cannot count money or tell time, and who did not do a single page of homework after November when his mother gave up fighting with him for 2 hours nightly – the teacher claims that this child had no behavior problems, is on grade level for reading and math (math that includes telling time and counting money), and has turned in every single homework assignment given to him.

Denied because they believe the teacher. Even though the notes and the assessments and the incomplete homework is produced. An ‘observation’ by another teacher is said to show no problems: (parents are promised copies of this but it’s never been sent.)

Teacher (and school) trumps parents. Teacher (and school) trumps experts. Teacher (and school) trumps doctors and OT.  Teacher (and school) trumps all.

So the parents, who are sad and scared and freaked out and angry – so angry – do the only thing they can do: pray for a decent teacher next year. And they get one! Thank goodness! All that wheel squeaking amounted to something. But then… wonderful, calm, experienced, organized teacher is having difficulty. After about 4 weeks the honeymoon is over with the child. She puts him by himself in corner. She tries to make him behave using the 15-minute increment behavior plan. She starts allowing him to play war games on computer all day because it keeps him quiet. She notices he has problems, but there is only one of her and so many of them…

And so the social worker, who, bless his heart, is really only trying to help (we must still try to believe this: the goodheartedness of most people) comes up with a plan where the child will report to a nearly empty room every morning and “entertain” himself until his medication kicks in. Because that is what they’ve determined to be the problem: the child’s medication. Without it he is unable to stay seated and won’t follow directions. With it he can be persuaded to stay in the corner playing war games. Or maybe do a math worksheet or 2 in a very small group. After a day of this plan the child refuses to go to school. Refuses.  Runs away when it’s time to leave. And the day after that he makes himself vomit so he won’t have to go and sit in that room and face the wall.

So parents once again panic and double the meds (with doctor’s permission).  They start getting up at 5 a.m. to give him the highest possible dose of medication possible…which is repeated at school a second time. This results in 5 pounds on an already underweight boy lost in 5 weeks, 4 vomiting sessions, and a tweaked-out, freaked out zombie of a child.

Part 2: Enough already?

(image by flickr user: http://www.flickr.com/photos/cogdog/)

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