The View From Kalamazoo

This final installment in my series on parenting my ADHD kid appears as part of Blogging For Kids With Disabilities Day, initiated over at 11D. Here is a list of other participants (please see 11D for any later additions I may miss):

11D

The Useless Tree

Big Balagan

Postcards from LA

I Speak of Dreams

Moot Thoughts & Musings

Ancarett

My daughter Emma is 8 years old. She has ADHD and learning disabilities. It might be a good idea to add that ADHD is known to have a significant chance of other co-morbidities, as well, so it’s not unusual for teenagers (as not all of the co-morbid conditions appear in early childhood) to be struggling with ADHD, LDs, and other things, such as OCD, ODD, anxiety or depression, etc. Once the biochemical system is wonky in one way, it’s not hard for me to see how other biochemical area may be touched as well – like a spider’s web..the vibration of a fly on one end of a strand of silk can be felt throughout the web. I’m watching Emma closely, therefore. I see anxiety-driven things (like nail biting, and teeth grinding in her sleep), and I don’t be surprised if OCD becomes more pronounced – I’m seeing some Monk-like things, but they are still pretty scatter-shot.

On ADHD, part III

Note: A lot of other parents have a lot of stories to tell, and there are many children struggling with bigger issues, I’m not writing these (part I, part II) to bewail my situation nor to compare Em with any other child – but if you don’t know what this is like, maybe you should. If you’re just starting down this road, know you’re not alone and please look to the links at the bottom of the left side-bar for more information and help. It’s not easy, and admitting to others or to yourself that it isn’t easy is freeing – let go of any guilt, any shame, and other baggage other people are trying to saddle you with and then use that energy for your kid. There is a lot of hooey out there, much of it coming from the media, so I hope I can dispel some of it with this series of blog entries.

Education and the divine Miss Em:

Emma never named her dollies, not until just before she was 4, and then all were named the same name. She never drew representationally, not a flower, not a house, not anything. I’d had her in preschool since she was 3 1/2 and they’d do projects and such all of the time – she needed a lot of help just to glue one piece of paper to another. She scribbled, and usually stuck to one or two colors of crayons, as she’d not be at the table long enough to switch more than that. She ran everywhere – walking just didn’t seem possible unless it was next to an adult holding fast to her hand. I knew something was not quite right, but didn’t know precisely what wasn’t on-target for her age, and as she was (still is) the apple of Daddy’s eye I didn’t have support there, either. I had her hearing, and then her speech, tested as, at least, it did seem pretty obvious to him that she wasn’t where she should have been verbally. (hearing testing on a severely ADHD kid, BTW, is hell on wheels) She was a year behind in expressive and receptive speech, and so speech therapy was eventually arranged. She had a year of it the school year before Kindergarten and spent half-days in a pre-primary impaired/PEEP environment.

She started Kindergarten at 5 – turning 6 mid-year – and I was certain this would be the test. I was right. The teacher reported back almost immediately (her lack of focus, her activity level, and how dreadfully, dreadfully behind she was, not to mention the way she had of totally disrupting the entire class and keeping every child there off-task) and with that input Dad was finally on-board with further testing and the diagnosis (from a psychology student finishing his Diss. and doing his clinical time, he was specialized in young children and diagnostics) showed where we were: the normal range was along the bottom of the page, and he had her tracked to a place close to the top edge. Orbit, in other words, she’s in orbit.

What parent wants to hear “There’s something wrong with your kid.”?? I was both relieved that my instincts were correct and I wasn’t just a bad parent, and devastated that I was right. I mourned. I mourned all of the little dreams that pregnant mothers have of the wonders their children will be and achieve, mourned the assumptions that she would surely go to college, and, I realized later, mourned the vision I had for myself as a parent, my ideal. All bets were off – new information, new input, new and utterly unexpected challenges, a new game plan. I suppose that may sound morbid, but to be present in the situation and deal head-on with reality, I needed to let loose all of my baggage that didn’t fit. To deal with Emma as she was I had to stop thinking of Emma as she could have been…if… It was very hard. [It still is. I often see her best buddy from pre-school (same age as Em) excelling in sports, in school, in everything she tries, it seems. I’m friends with her mother, and I congratulate her achievements and am happy to see a kid I like a lot do very well. But, as unfair to myself and to Emma it may be, it hurts. There is a pit in my stomach and literal heartache at the reminder of just how far behind Emma is, and an overwhelming feeling of helplessness that I can’t, no matter what I do, really make it better.]

I began researching, buying books. I worked with her ped to start medication. The first day she took it she drew a picture of a house. She sat on a chair at a table and drew a picture. I didn’t have a kid sedated and drooling like the naysayers warned – I had Emma instead of a blond whirlwind. Emma instead of a feral child. Emma instead of a child so unfocused she couldn’t converse.

I fought with my family over this issue – phone call after phone call of them accusing me, badgering me, guilt-tripping me about meds. I’m just a bad parent, or a lazy one drugging my kid into submission…the usual script. I had to hang up on my sister during one particularly painful exchange. My father kept telling me he wasn’t comfortable with medicating Emma. I shouted into the phone that his comfort wasn’t my concern. (at least I had a couple days of peace when they were too pissed off at me to call again) This was November – my sister was coming up from TN for the holidays and there was no escaping it – I’d have to face their wrath in person. They saw the difference on – and with something to compare it to, off – the meds. They stopped.

This is not to say there has been all smooth-sailing. There was the usual period of trial-and-error dosing. She has switched meds because the original, while moderately effective, also held some nasty side-effects for her. There is a letdown point (sort of like a sugar ‘crash’) after the med wears off that is not fun for her. She lost a fair amount of weight right at first, and that meant my petite girl who had always been at the 5% mark on the height/weight chart fell off the chart completely. We’ve made progress, but still aren’t back on (I have fantasies about that 1% mark). We’ve had to creatively deal with her system’s natural tendency to metabolize medications at twice the normal speed (yes, even Tylenol). We have had godawfulexpensive metabolic testing to be sure all we’re dealing with is the ADHD, bone age x-rays to monitor her growth, I try all sorts of different things to get nutrition into her, as a side effect of stimulant medication is reduction in appetite. Pediasure, not so successful. Wheat germ to increase her appetite, couldn’t get it into her. Having the same experience with flaxseed oil (omegas – UK study indicates a deficiency in ADHD kids compared to their peers) as she can’t swallow the capsules (trying milkshakes next). After a lot of attempts have found a vitamin she’ll take. If she doesn’t eat, as in if she skips lunch at school and no adult notices, she won’t metabolize her meds properly and they’ll all have a very, very bad afternoon. It’s an ongoing struggle. She’s so thin she can’t float, so swim lessons have been a scary thing for her. She is so thin she dehydrates in no time flat, and I’ve stayed with her in the hospital after a little tummy bug required a few days with IV fluids.

Even though the eating-while-at-school struggle is a frustration (how is it that a bunch of adults can’t watch one little kid like a hawk and keep reminding her to eat? It’s not like I tie her down and force-feed her at home, it just requires effort) for the most part other things have not. We started her with continuing speech therapy, and I had asked for an assessment that first year (but the psych dragged her feet and never responded to anything from me or fro the teacher. I didn’t know better, then) but that waited until her second year there (new psych!) and an IEP was put into place. We’ve documented, to some degree, her learning disabilities. From what I’ve read roughly 50% of ADHD kids have LDs, 80% of those LDs are reading-related, as are Emma’s. She has a teacher consultant work with her twice a week, when possible the teachers have all modified their testing for Emma (she shuts down if she thinks she’s being tested) .. modifications which require a ton more time and effort on their part. At the end of first grade I requested she not be promoted, as she was still so behind and simply hadn’t had the time to catch up to any reasonable point. The teacher backed me, and despite it not being something IDEA likes, the principal nor psych gave me no hassle (they know me by now. it’s best not to hassle me, I never walk in the door without knowing what I’m asking and why.) There have been some glitches, but the office staff (there is no nurse) handles her medication just fine and they are fond of her. We’re lucky that just about everyone who works with her is fond of her, as she’s a tough customer, and her teachers have been as interested in Emma’s education as I. Not everyone has this sort of school experience, and I can’t assume it will continue to go as (relatively) smoothly – I can’t imagine trying to do this if I had to fight her teacher tooth-and-nail.

We pay oh-good-lord! amounts for tutoring (tried summer school, and though free was not successful for her). We’ve done gymnastics off and on (mostly on) to give her a physical outlet that 1. worked with her size, and 2. wasn’t a team sport. I manage to get partial scholarships for her to take art classes at the art institute here, as it’s 1. one thing she really enjoys that she doesn’t get frustrated by noticing her different skill level, 2. benefits her fine motor function, which is also behind, and 3. seems to boost her self-esteem, which is, as far as I’m concerned, a vital thing. She’s been to week-long girl scout day camp a couple of times, and liked it a lot – the group at her school, however, are all the next age-level, and I certainly have no time to be a leader, or PTA mom, or any of that.

I admit that while I’ve done a ton of research on the medical side of things, I lag far behind on the legal. I will need to have that well in hand soon, as each new school year I worry that this will be the year I have to stage my own version of the OK Corral gunfight and come out with both guns aimed, cocked and ready. I know money is an issue for the schools, and I know that our definitions of ‘adequate’ aren’t going to match. I’m more than a little frightened that at high noon I don’t be able to fight for her as skillfully as she’ll need.

We do what we can, and always wish we could do more. This stuff isn’t cheap, not by a long shot. But this stuff is necessary, as the end-result of not worrying so much about her education, development, and self-esteem could be very grave, indeed. A 13-year study has recently asserted that young adults who had ADHD are more likely than their peers to get fired, to shun birth control and become parents by age 21 and to have higher credit card debt and less savings. I think a similar study should be set up to track children from K-age 25 to track age of diagnosis, age of treatment, track the child’s progress in school – there is more in play than just the ADHD taken out of context. If a child has poor school performance, low self-esteem, and poor peer relations (whether ADHD or not) I would expect to see some of the same results – so those factors as a result of poorly managed ADHD will only be exacerbated by it as the child ages (note I did not say ‘matures’). This is something that drives me to work as hard as I do on this stuff – visions of my darling daughter in prison orange, as a pregnant teen, as a runaway set up for abuse by who knows who. I can’t ignore the worst-case scenarios because it’s when I do that, that moment, that it’ll start to unravel. If I don’t set her up for as much success as she can achieve now it’ll be too late later. So please don’t accuse me of being unduly negative because I have to live deeply grounded in reality and possibilities that don’t begin and end with images of graduations, accolades, awards. My daughter’s life is at stake.

Now, here’s the good part, the part I know you’ve been waiting for and have feared I ignore completely: Emma is a wonderful gift.

She is beautiful, and creative, and funny, and inventive, and wonderfully entertaining. She is kind and loving.

She makes up songs about anything and everything. She fancies herself Buffy the Vampire Slayer and will sing along with Dad’s episode soundtrack, draws portraits of herself and her brother, and makes up wild dances with weird gymnastics poses.

She is obsessed with weather, volcanoes, and is fascinated by doctors and nurses and doctor-shows (like on TLC/Discovery Channel). She makes Lego structures that are carefully designed and require grand explanations on form and function.

She insisted on being at the hospital when her Brother was born, talked to him (through my belly-button) all the time, and held and kissed my hand during labor (early-on, before my parents came to supervise).

She mothers her Brother and she cares for the kitties (she does the food, I do the water, Dad does the litter). She helps her great-Grandma by running and getting her this and that.

She loves photographs and does her own version of scrapbooking (all her, I don’t do it). She dresses some of her Ken dolls in lovely springtime frocks, while others are always in pants.

She’s concerned when I have a headache and will kiss my forehead to make it better. She feels the loss of my Grandfather (who died when she was 9 months old) so acutely that she’ll burst into tears, overcome with missing him. She knows he loved her especially (she has his taxi-cab ears!) and treasures images of him holding her.

She enjoys helping clean anything that can be cleaned with a wipe or some spray-cleaner.

She sets the table, puts away the clean silverware (and arranges and re-arranges the drawer!), and loves to vacuum.

She wants to be a weatherman, a teacher, and a doctor all at the same time.

Yes, I realize this was a disproportionately small bit compared to all that came before – but it’s my experience with the hard parts that may offer a glimpse into the unknown, or that some may need to hear to feel less alone as they navigate the systems and struggle with their own situations. I don’t think I have to offer details on how Emma snuggles into my lap when she’s feeling ouchy or how her eyes twinkle when she’s acting silly … loving the child is natural, learning all that is necessary to be their advocate isn’t. You already know how to enjoy the wonderful, quirky things about your child..and even on those days when it’s not easy to enjoy the good parts because the frustration is so great (I have them too, I think everyone does sometimes) know that tomorrow is a new day. Don’t feel guilt over what joy you may have not noticed in your stress or your anger today, revel in the knowledge that tomorrow is a whole new day to enjoy seeing a whole different world through the wonderfully wide, impressionable, creative eyes of your wonderful ADHD child – and then do it..