Take Me Out To The Ball Game!

Tuesday, February 13, 2007

Tuesday Night

Good day: turned DP loose on the Valentine's Day cookies and let her cut them out and frost them. Was it hard for me to just let her do everything? No, not at all. Now, if I had any kind of control issues or if I wanted things "just so" it could have been a real struggle but as it turns out, the bathroom has a door on it and I found it very peaceful in there for a couple of moments.

No seriously, she did a great job and she LIVES to be creative. I should probably always have a bag of icing in the fridge for her to play with....and it really is the perfect sensory activity. The cookies look like a seven year old decorated them, just as they should.

Then we went to violin lesson this afternoon. She hasn't had a great week of practicing so I wasn't holding out much hope for a very good session but she's a performer at heart so she pulled out a great session. Even impressed the teacher with her technique-book work (which she practiced maybe three times in the past week, none with my help). How her brain works is amazing to witness.

It's only Tuesday night and I swear it feels like Thursday. Homeschooling is great but it's intense: always trying to keep them constructively occupied (especially Bug) with one bouncing off the walls and the other rolling on his head. I'm battling the enemy at every turn that "I'm not doing enough" (especially for Bug) or that "we're not structured enough", and therefor neither one of them is benefiting. It's amazing how incidious and dangerous those thoughts are. And those thoughts are SO wrapped up in performance. Teaching my kids at home is NOT a performance!! So I'm getting lots of good practice at rebuking lies and putting on the full armor of God everyday. And then sometimes I let the armor slide off and succomb to the pressures of performance and inevitably lose patience with both my kids and everyone hurts.

Today I Remember first written Summer '04

Five years and roughly eight months ago I called a virtual stranger on the phone. I had heard her name through her son, with whom I worked previously. He had told me that his mom, "worked to make sure that little kids in our town with disabilities got the help they needed". So on that information and the fact I knew this young man's last name, I looked them up in the phone book and dialed the phone one fateful evening.For the next hour and a half this stranger told me what kind of life the newborn baby boy in the hospital nursery was going to have. I had called her to ask her if he would have anything in the area code of a "normal" life. He was born with a genetic anomaly. It was certain he would have physical delays and there was a list of possible medical problems associated with his genetic make-up. He would most certainly have cognitive delays. I remember hearing the word mental retardation. It was all overwhelming and I remember feeling a little frantic inside as to whether I was the "right" parent for this baby.So this woman I had only met in passing, talked to me in excited tones telling me all about how much better life is now for babies and children with disabilities. So much better than when her now-adult son who has a disability was born. That now children have access to "in home" early intervention supports and services. That I could have as much or as little "intervention" as I wanted for him. That as his parents we would be the leaders of his "team", whatever that team might look like: therapists, teachers, doctors, specialists, etc....And then I remember the next thing she said like it was yesterday. She said, "And he'll go to the church nursery and play with the other kids, and he'll go to regular pre-school, and then he'll go to regular kindergarten and first grade, so on and so on, and he'll be in Cub Scouts if he wants to and he'll play T-ball if he wants to. He will do everything that interests him and that you expose him to." I got off the phone feeling hopeful. That that little baby on oxygen was going to somehow be okay. I had confidence there were people ready and waiting to help us help him make his way through this world.Today I remembered that evening as my son and I walked into his new elementary school to sign him up for kindergarten.Tonight as I write this with tears of gratefulness in my eyes I thank Kathy Serena for being my messenger of hope and promise that night. And to all the other "Kathy Serena's" around the state (that I know of, and I know there are many, many more): Carol Meredith, Dianne McNamarra, Meg Day, Julie Harmon, Lila Stoehl, Robin Bolduc, Lorri Park, Julie Reiskin, Christy Blakely, Romie Tobin, and so many more, thank you for investing in parents.Today Hayden McLaughlin signed up for kindergarten because Kathy Serena and all of you believe that all children belong, no matter what their labels.

The Eight-Hour Blood Draw......first written Summer 2004

Well I don't know what the rest of you did today for fun but we put our kid
through an 8 hour blood draw. No simple stick for us, no sireeeeeee.
I'm so frustrated I could spit. And of course it's not just me who's
frustrated, it's also the 4 year old sister with sensory integration issues, the
husband (no explanation needed), and the almost 6 year old, who not even three
weeks ago underwent 4 1/2 hours of surgery. As I write, the whirling-dirvish-4
year old has just taken a break from a 25 minute shrieking-screaming-raging
episode after FINALLY arriving home. (I feel like the Israelites finally seeing
the Promised Land......only with a lot of crabby kids in tow (probably some
historical and hysterical accuracy there)).
But I digress, oh yes, the 8 ______ hour blood draw.
It all started at the infectious disease doc's office at 10:30 this morning
(didn't actually get in to see him until 11:30, so you know a couple of family
members are already real jolly), where we went in seeking a solution to the
failed broviac mechanism. (it puts in meds but won't give up blood). So in the
discussion about the proverbial turnip (that would be our wonderful and
endearing 5 year old son who is trying his hardest to get over years of ear
infections, all the while keeping all his blood for himself), we decided to do
whatever we could about extracting blood without another surgery (broviac
insertion). We decided on doing a "TPA" and then if that didn't work (which the
doc didn't think would work because we all pretty much agree, including the
surgeon who inserted the broviac line, that the failure of the broviac line is
mechanical in nature and not due to a blood clot problem), that we would do a
femural draw (the main vein through the groin area-gee that makes even me a
little queasy.......hmm, no wonder my husband volunteered to watch more
Playhouse Disney in the ped's room w/ the little sister at that point!).
So we get to the hospital at 2:15pm and begin w/ the TPA-and to no one's
surprise it isn't successful. (The protocal calls for one dose at the regular
amount, then wait for :30-try to draw back on the line for blood, and then if
that doesn't work, another double dose and wait another :30. No big deal---a
little over an hour in the peds unit.) So then on to the femural line. First
gave him Versed because his strength and ability to grow 16 limbs
instantaneously has preceeded him in the peds unit. Got the amount we needed
(more blood this time than at any other time in his life BTW). Hung out for a
few minutes in peds ICU just to make sure everything's good and then we head
back to his regular room in peds. No big deal: let him wake up a little,
monitor his O2, etc...and expect to go home by 7pm. Still a very long day for
everyone but on track for something in the neighborhood of sanity.
I.D. doc comes in a little before 7pm and says, "We have to do it over again,
the blood clotted before they could run the labs." Turns out the vials SAT
around too long. I said, "What do you mean SAT around too long?? I saw the
nurse pour the blood from the syringe to the different vials and then the vials
disappeared!". The ID Doc was clearly very unhappy (presumably w/ the lab) and
said he wasn't sure what had happened but that our option were now a finger
prick or a heel stick and that the labs would be done STAT. Almost an hour
later, after I had introduced myself to the now-night shift nurse and tactfully
suggested we might want to get this process under way sometime soon, we poked
his heel (which now with the rest of his body, is fully recovered from the 1 1/2
tsp dose of Versed). And of course it's not JUST the poke. It's the WAITING
for the blood to flow, all the while you could swear you are channeling Steve
Irwin. It was just horrid. I had to hold him for almost 10 minutes to get a
vial the diameter of a straw and the length of your big toe. We didn't get out
of there until 10pm!! And by that time the kids were watching Nemo on the
hospital video channel and didn't want to leave!! OIY!!!!!
So this is our alternative to a broviac that won't give up blood?? Plan D
better be a LOT more effective than what we've come up with so far............

Help! We're Homeschooling!



I am a home-schooling mom. We are a home-schooling family.

Even now, mid way through year number two of this journey those words still get hitched in my throat when I profess it. “Why?” you ask. As you may know, home-schooling is very common now days and especially in the state of Washington, where by some accounts, there are upwards of 20,000 students learning at home. Washington’s also one of the first states in the nation to legally support home-schooling (or home-learning as I like to call it), so what’s the big deal if we add two more to their numbers? Why?? I’ll tell you why. Because up until about 15 minutes ago (figuratively speaking of course), I thought that people who taught their children at home were either geniuses themselves or certifiable. No in-betweens. No grey area. And since the kind folks at MENSA always write on the same thing on the back of my applications, “Don’t call us, we’ll call you”, and I’ve grown fond of the six brain cells that remain after becoming a parent, I had NO interest WHATSOEVER in teaching my children at home. Ever.

Have I mentioned that our two children have special needs? Who in their right mind would spend ALL day trying to teach one child with sensory integration dysfunction (which for those of you not familiar with the day-to-day life of a child with sensory issues, is on some days, like trying to bathe a cat: it sounds like a good idea at the beginning, especially if the cat is dirty. But in the end, your house is completely destroyed and you just want to drink yourself into oblivion until the memory is distant and your brain is in a blissful fog). But I digress. Our other child, our oldest, is eight and a half years old, has Down syndrome and hearing loss in both ears (which is a VAST improvement after being born profoundly deaf), and has huge cognitive delays as a result of the Infantile Spasms he contracted at the age of six months, (which virtually destroyed all of his previous development and set him back years). They appear to be very different from one another but both require hands-on parenting most of the time. No rest for the wicked, or tired Mommies.

So here I am fifteen minutes later writing about this transformation from dyed-in-the-wool anti-home-schooling parent (especially for kids with special needs) to a happy-and-grateful-we’re-doing-it-this-way parent. (The chewing sound you hear is me eating my words.) Who says God doesn’t have a sense of humor? Let me give you a little background. I wasn’t just pro-pubic school for my kids with special needs (especially our son with Down syndrome), I preached the sermon loud and clear for all families of kids with special needs from where we lived in Colorado. From where I sat on our community’s early intervention council to the preschool oversight committee, and at the state level where my husband and I organized and facilitated parent conferences for families with children with disabilities, the message was loud and clear: children with special needs need to be in a typical classroom with typical kids learning how to do typical things. My philosophy was we as parents must do our part and then some to make the equation work, but the best scenario is that children be surrounded by other children in school. My husband and I had founded the local Down syndrome association in the weeks after Hayden was born and I happily answered our oft-ringing phone to help other parents with therapy questions, systems issues, and how to have successful and meaningful IEP Staffings. We are well versed in the letter and spirit of IDEA and I believe that has served our children well. It is our hope that we’ve helped other children along the way too. And besides, I had plans to join a ladies’ golf league. No really. I passed the local public golf course everyday as I drove my smart and beautiful children to school and I had it all planned out: I would golf on the days I didn’t do water aerobics at the local Y, which I did nearly every morning after taking the kids to school. I was set.

And now here we are: our now seven year old daughter with sensory integration dysfunction is learning at home, and by all accounts is thriving. She built a radio with my dad this morning (she really wants to build a robot to clean the bathroom because she hates that chore, but we’ve managed to convince her to start small), she can tell you more about diamond mining than any seven year old has a right to know (she wants to own a diamond mine when she grows up so she can get the diamonds herself so she’s checked out books from the library on diamonds and has done internet searches on diamond mining), and can tell you why Pluto is no longer considered a planet. She still has sensory integration dysfunction but learning at home has taught her how to manage her environment in a much more positive way (translation: she doesn’t have nearly as many tantrums as before and now sometimes when she has one, it doesn’t even measure on the Richter scale, a HUGE improvement in our family’s overall mental health). She still startles easily, sleeps very lightly and gets over-stimulated quickly but overall she is a much calmer child and is able to attend to things like writing, reading and math for much longer periods of time. She may not think the activity is the greatest thing since sliced bread but she is able to do it for longer stretches. She is also able to have a sensory diet at home which we believe supports her ability to learn. She sits at the table with her feet planted on a stool of some kind, often with a bean bag in her lap. Sometimes when she’s more fidgety and restless than normal, she reads aloud while standing in a bucket of rice or beans. She’s able to take breaks to burn energy and do stretching. I try to incorporate some sort of propreoceptive work into her days. These are but a few of the strategies that we use with her and we are constantly trying new and different “tools” to find better fits. So far her sensory issues don’t appear to have affected her cognitively. On the contrary, her brain seems to work in overdrive and it’s I who feel like I’m hanging on to the tail of the tiger.

Our son is also doing well, and I suppose at the end of the day, that’s the real miracle to me. I’m a self-proclaimed rabid inclusion-ist who has always said that ALL children with disabilities (and DS especially) should be in public schools surrounded by their typical peers.(Isn’t that nice of me to not even know your child but already know what’s best for him/her?) Hayden had been in the public school system for four years before we dared to open our eyes as to finding a different solution for their learning needs. I had always approached the whole education process from the goal that each child with a disability have all the supports and services he/she needs in the typical classroom and that the general education teacher believes that ALL children can learn and that she/he in turn have ALL the supports and resources afforded her, then there’s NO reason why a child with a disability should ever be in a self-contained classroom. I think a big part of me still believes that. I also believed that parents who kept their children with disabilities at home (especially those with DS) were by de facto institutionalizing them. (See, I’m an equal-opportunity-know-it-all. I’ve never let lack of personal experience or knowledge stop me from opining and bloviating about the choices of others. I’m also a romantic-utopian-vegetarian-right-wing-tree-hugging- Christian-just so you know where I’m coming from).

So we’re half way through year number two of learning at home and we’re doing amazingly well, considering I’m the one who’s home with them all day long. I take no credit for this, so please don’t mistake my boasting with self-aggrandizing. Hayden is a wonder. He is a daily walking miracle. Here’s a child born profoundly deaf who’s had so many reconstructive ear surgeries that I almost have to take off my shoes to count. Yet he is wired from the inside out for music: he has perfect pitch, learns a song after hearing it once, plays his guitar EVERYDAY and the violin almost everyday, and has incredibly clear speech when he’s singing (which is most of the time). In Colorado he was in music therapy with arguably the best music therapist in the state and by the time we left he was playing songs on the piano with the help of a finger guide only. Now we have to settle for mom making up songs for EVERY activity of the day. He helps set the table and clear the dishes after every meal and can dress himself (not that he wants to show off that skill too often. I think he worries that I would be bored stiff if I didn’t attend to his every whim every minute of the day). His self confidence is staggering. He thinks he’s the funniest person in THE WORLD and is an extremely good judge of character (in other words he can tell if a total stranger is worth a hoot or not). He is learning his colors, can say his ABC’s as clear as a bell, and can clearly communicate his needs with sign language and words. Granted his needs and wants are fairly simple at this point: to play with water in the bathroom sink and to play the violin. So those signs (water and music) get A LOT of use throughout the day. As does my response: “Not now, maybe later”. And maybe the BIGGEST benefit we’ve realized so far on this journey is Hayden’s health. In that he has a reasonably good level of it!! I had come to think of his runny nose as a part of him like his beautiful chocolate-brown eyes. Wow, a kid who’s come through SO MUCH medically (including MERSA, a central line to battle relentless inner ear infections, and multiple surgeries) without a constant cold or facial drainage. That ALONE is worth the price of admission for us!

The decision-making process of bringing Hayden home for school began when I started thinking in the late Spring/early Summer of 2005, about Hayden’s academic future. By all accounts we had had a brilliant staffing earlier in the spring and everyone at the table had decided that, despite Hayden’s psychologically graded “age” and development of about 18months-2years old, he would be in the first grade class for at least 60% of the school day and he would be “pulled out” for activities/academics where it was appropriate for the remainder of his school day. He was attending a very progressive school in our district that operated on a year round schedule and a majority of the classrooms had children with disabilities in them. A few weeks after that staffing when we were up here on a three week vacation I began thinking to myself, “And then what will happen when Hayden is in this first grade class? Will he actually be learning? Will he be authentically included in all the class activities?” Not only did a peaceful answer those questions not come, the only realistic outcome that I could envision was that Hayden would be on a path of social and emotional isolation without any meaningful scholastic experience. So then I started wondering to myself, “What would be the best possible learning situation for Hayden?” My answer to that was that he somehow have a constant one-on-one para-professional with him….kind of like a private tutor to challenge him and motivate him but not do his work for him (as had been the case during his entire year in kindergarten). It would have to be someone who really knew Hayden and knew when he was manipulating her or when he was genuinely tired/bored/over-stimulated/discouraged, etc….I knew that public schools just weren’t set up to provide a fully inclusive environment on one hand and yet provide constant one-on-one teaching on the other. But I knew through my work with him at home and through our home-based OT’s and ST’s that in that scenario is exactly where Hayden thrived and shined. He really could understand, learn and show what he knew but it hadn’t happened during his hours at school to that point.

So now what to do? I barely gave myself permission to even think of the “H-word”. And when I did, even for a microsecond, my whole body would shudder and I’d start hyperventilating. Back then those nasty episodes were brief but the longer our vacation lasted (that’s another epic story in itself) those pesky “H” thoughts popped into my mind like those obnoxious pop-up ads on the internet. “It’s something I ate”, I kept telling myself, willing myself self back into my reality that I couldn’t POSSIBLY teach my son at home and hope to accomplish anything close to an IEP goal. And there was the “little” sister to think about too. By this time she was due to be enrolled in kindergarten in the Fall but both my husband and I had already wondered how she could possibly handle a typical day in a typical kindergarten classroom, where even under the best of conditions and classroom management, it would be a very stimulating and very busy day for her. How would she be able to cope after school when she couldn’t even handle the two day a week preschool she had attended for two years?

I gave myself permission to think about the BIG “what if”. “What if we taught Hayden at home?” My knee jerk reaction was that the sky would fall in and Hayden wouldn’t have a snowball’s chance in you-know-where to learn anything functional, like how to read, write, dress himself, how to really learn how to communicate by sign or speech or how to stand in line, sit with his hands in his lap and not bother his neighbor. After all, that’s what school’s for right? But I didn’t want to be ruled by knee-jerks and my heart palpitations so my husband and I really started talking about what that it could look like if we kept the kids and taught them at home, and we came to the conclusion that 1) We really do know Hayden better than anyone and he loves us and trusts us more than anyone (that seemed like pretty good motivation, and 2) Chances were we couldn’t do any worse than what had already been done with and for him in the previous four years in public school. (I know, I know, not exactly the biggest internal vote of confidence. Where’s the USC Marching Band when you need it?) We could always try it for a semester and if it proved to be too overwhelming, too frustrating, or if we saw that the children were just miserable, we would rethink our strategy. Or if I ran out of serotonin-enhancing pharmaceuticals-that was really the key to my way of thinking.

So here we are: Hayden is more responsive and connected to his environment and the people around him than ever before. He is able to follow directions and respond appropriately when spoken to (whether he chooses to or not is a different matter entirely). He’s eating better than ever (that’s another story for another time: “Food-Based Sensory Issues vs. The Sanity Of The Parental Units), and he and his sister Delaney are so close now: their relationship is rock-sold, tight, tight, tight brother and sister, and he is actually learning new things (colors, shapes, words) and building his skills (fine motor, balance, physical stamina) everyday. Baby steps. Good daily routines that serve the children. I try not to “Build Rome In A Day”. Translation: I tell myself a hundred times a day that every little thing I do with each child is a building block for the next day, the next skill level, the next practical application. On my good days I readily give myself permission to just enjoy the process of creating a learning environment. On my not-so-good-days I call another home-schooling mom of a child with special needs and she tells me to sit down, put my head between, and breathe into a paper bag and stop flogging myself with the wet noodle. And who has time to flog anyway? By the time I put the wet noodle down, Hayden’s walking into the bathroom with the violin…………

Gigi McLaughlin lives in Tacoma with her husband, their two children and two dogs and her father, who often wonders when she’s going to take another vacation.