Take Me Out To The Ball Game!

Friday, March 30, 2007

It IS Enough.....Or Is It?

I think I should whiplash by today (Fri. afternoon) for all the homeschool-curriculum debating that's been going on in my head this week (as in the amount of). The primary question: "Is it enough? Am I doing enough?" On one shoulder the homeschool-mentor-in-my-mind is saying, "Yes, remember it's all baby steps. Every worksheet, every minute spent spelling counts and is a building block for the next step." The other voice, we'll call her Agnes, says "You're not doing enough!! That other homeschooling mom you talked to said her seven year old is doing historical narratives! You wouldn't know an historical narrative if it came up and bit you on the rear!" EEEK.

It must be National Diary Blogging month because I feel another diary-diatribe coming on. But done from a historical perspective of this past week: as much as my six brain cells can recall.


SUBJECT Approx. Time:

Spelling out loud in the car on 15 min
the way to the ped's office

Math: working on counting by 3 pages in workbook
yards, adding in columns, reading
math questions written out in long hand.
Neatness in written answers counted.

Phonics: 5-6 pages in workbook
Watching Reading Between The Lions 2 shows during the week

Violin practice 3 times so far this week


An entire morning of sensory integration
therapy & ndt


Balancing on the ball

Putting together blocks while balancing on the ball

Writing/balancing on the ball


Reading his reading words/balance on the ball (3xdaily)

Playing the guitar/violin while on the ball

Angst. Why does this not seem like enough? Why do I feel like I'm failing a test. Nagging doubts. The bane of my existence this week. Fighting off the enemy of "You're failing your kids".

Diary of Days

I know I’m tired by 7:30 or 8 at night. Every night. No, let me clarify that. I know by 7:30 or 8 every night as we’re putting the kids to bed that I feel like I’ve been pulled through a hole backwards. “But why?”, I ask myself? “What did I do today?” In an effort to answer that question (and no, my sensitive-new-age-guy husband wouldn’t dare ask me that) I’ve decided to keep a diary of sorts. Not to prove anything to anyone about more or less to show myself how I spend/use my time. Pass me the bons bons please.

Friday, March 23rd

7am: Up and at ‘em to get DP to her OT eval on time

8:25 Left the house to take Bug to Costco-Sue’s house so she can watch him while DP and I go to her eval. Don’t’ account for morning traffic so I know I’m going to be late.

9:05 Costco-Sue had given me directions on a shortcut to get there so we arrive only 5 minutes late at the eval, which is more than not, when I arrive at places.

10:00 Leave the clinic w/ over-stimulated daughter in tow and wonder how we’re going to make it through the day without at least one major meltdown

10-10:45 Go to Target, pick up two new pillows to replace the trash-heaps that have been passing for pillows the pass few months (and I wonder why my post-concussive headaches continue) and feed the girl-child at the mall food court

11-1:00pm Go to Costco-Sue’s house and hang out for awhile, solving all the problems of the world, all the while commenting on what miracles our children are

1:30 Stop by the food co-op where my presence had been requested earlier but alas, I had missed my window of opportunity and drove back home…10 miles in the other direction.

1:45 Get to the house, leave the children in the car, to pick up a couple of library books and drop them off at the library

1:45-2:30 At the library with the kids where the boy picks out books on firetrucks and American flags and a book about going to the doctor, which he carries around with him throughout the library. Have to do a little negotiation with him to have him read it in a chair in the “grown up” area closer to where I’ll be and not the children’s area, which he views as his own living room. The daughter finds a Bill Nye The Science Guy DVD, (which thrills her to no end even though she’s seen it so many times she quotes The Master Of Science verbatim), and a Meerkat Manor set of DVD’s, which pretty much puts her over the edge of excitement and primes the pump for more Meerkats, which were highly anticipated to be watched later that evening. Plead insanity with the librarian and tell her I can’t find two books the library says have been past due since January. I’ve turned this little house upside down for weeks and can’t find either one at all. Feel horrible and flog myself so I don’t deal with it in person at the library. Turns out they didn’t really want my first born after all and by Friday I’m so numb that even the Chinese Water Torture doesn’t make me bat an eyelash.

2:30 Finish errands and arrive at home and face the day:

Check the mail and bring in the paper from the driveway

Unload the car of various items of children-paraphenalia. It all seems to multiple during any car-excursion and is rather eery. Empty the trunk of the newly acquired pillows and kitchen broom.

Set the boy up with a DVD in my dad’s office so he’s 1) contained and 2) safe for the next few minutes. This involves finding his hearing aids and his FM system and getting that hooked up so I don’t have to hear Psalty for the 145th time. Get the girl set up at the other end of the house in our bedroom w/ a Larry Boy video so I can get a couple of things done in the next few minutes, conceivably Uninterrupted (oh wait, I must be on crack again!!)

Put the folded laundry away that’s been sitting on the couch

Put more laundry in the washer to soak (my dad’s not in town right now so thankfully I don’t have to face the ridicule of compulsive soaking)

Wash the dishes in the sink/put the clean dishes from the dishwasher away

Sweep the floors

Pick up toys

Check e-mail and see if anything is happening that I need to tend to

Larry Boy is done so I have the girl child sit on the couch with me and finish reading one of the “1st Little House” books to me. I tell her she’s doing a great job and her reading is really coming along nicely.

Then we read a children’s book of the Phillippines, where my father is currently on a medical mission. She compares the exploits of Ferdinand Magellan and American Imperialism to that of Meerkat behavior. Her analogies, however far reaching, never cease to amaze me on one hand and exhaust me on the other. I’m more than a little nervous for the the future. Both hers and mine. Wonder if M.I.T. does correspondence work.

5pm Just when I start thinking seriously about making dinner, the husband calls and says he’s broken his 10 day fast and would we like to meet as a family for dinner at a restaurant near the house. I told him I’d need to think about it for awhile and then responded .04 seconds later with a resounding yes.

5-6pm Finish reading w/ the daughter, change the boy’s clothes for the third time that day and do a final “pick up” of things around the house.

6:15 Leave for the restaurant

8:00pm Get home. Let the kids watch Meerkat Manor. I bring the laptop to the bedroom and IM my best friend and watch a little of the show

9pm Lights out for the kiddos

Brain feels like pudding….but why?

SAT/SUN 3/24&25

9am: I awake with the loft goal of achieving the aerobic activity of a mollusk but I’ve committed to watching my two year old nephew for the day so I get in the shower hoping to scrub the sleepy scales from my body (no easy undertaking given the amount of real estate I must now cover).

DP in the meantime is watching the Meerkat Manor DVD we got from the library. I figure that will buy me at least another two hours. I’m not that far off the mark.

I awake up with that nagging “bumpy” feeling in my throat. After my shower I immediately make garlic tea, which is about the last thing I want to drink on a Saturday morning. I’m not hungry for breakfast but the garlic in the tea immediately threatens to undo my insides so I find something to nibble on. I call my friend Costco-Sue and tell her my throat is feeling funny and since I had seen her the previous two days, I thought she might want to know. Her back is already killing her for day #2 so she’s especially receptive to hearing that a new bug might be threatening to infect her family. While I’m on the phone with her and in between being interrupted by the 7 year old who’s quibbling with the two year old cousin, and trying to divert my oldest son from scaling the closet shelves to watch yet another DVD, I make myself another cup of garlic tea. The first one was just so yummy I thought the second one would send me into orbit. Truthfully, one of the “ballet moms” (a sad moniker I know, but it’s succinct and accurate. However I do not imply in any way that she is a stage mom ….just a mom of another ballet student. So much for being succinct) SWEARS by this tea and I don’t want even a HINT of sickness in my body so I make myself cup #2 hoping to kill off all the germs by Noon.

By 10:30 My nephew arrives and we get him happily ensconced with play with his cousins and my niece off to her job as a line cook.

My husband comes into the kitchen to make his traditional Saturday Morning Pancakes. I’m relieved off that duty due to utter failure in my previous attempt at pinch-hitting for him. The incongruity of being a Chef For Hire but not be able to make thoroughly cooked pancakes doesn’t faze me in the least. I also burn toast with frightening regularity (you laugh but the smoke alarm in the kitchen is disarmed). I’d rather make a Portobello risotto, the Barefoot Contessa’s Lemon Cake, Chocolate Hazelnut Brownies, or Crispy Tofu and Green Beans any day. But I digress: we don’t have any maple syrup and I’m growing tired of my apple syrup so I find some fresh blueberries in the garage fridge which desperately need to be used before they take on the appearance and consistency of shriveled b’b’s. I toss the blueberries in a pan with some water and sugar and make blueberry syrup while the pancakes are cooking.
While I’m trashing the kitchen, I figure I might as well make pesto with some free basil I got from food co-op (why I was the only one who wanted fresh basil is WAY beyond me but I ended up taking the whole batch home).

12:30 Get the Raven Haired Whirling Dirvish going on her violin practice, as she had missed Friday’s session. Next hour spent in violin-practice-hell because the girl-child is WAY overspent from the OT eval from the day before. I make a snap decision toward the end of the Whine Where’s My Cheese? Session that she too needs a nap. At first she thinks she’s going to be able to nap WITH her little cousin but because I am the Evil Mother From Hell, I dash those hopes into smithereens (it’s the joy in the little things I keep telling myself).

1:45-2:15 Snacks before exile. The two year old happily picks up the toys he’s strewn about the house and settles in for some yogourt. His older cousin however is performing a believable scene from Gone With The Wind and is convincingly wailing about how she’ll die if she has to lie down and take a nap. Then she demands that I calm her down. I laugh, which not only doesn’t help the situation, it adds to her hysteria. But she does manage to get herself together long enough to sit at the table where her little cousin is chanting to her, “Don’t cry….Don’t cry”. So sweet. I need more of him.

2:30-4:15 The seven year old manages to come out of the bedroom no less than five times to tell us that she doesn’t need to sleep and is really in quite a fine mood. Her older brother is set up with a movie but grows bored so my husband and I trade off reading and playing with him.

I try to IM with my best friend but am interrupted fairly frequently by a slick sales pitch of non-tiredness and complete willingness to be civil and respectful.

4:15 I give up all semblances of having an adult conversation with anyone regardless of the medium and tell the daughter to get herself dressed for church. This, of course, requires total management on my part as she has tragically lost all ability to dress herself in any way. I’m seeing a pattern here.

I try to put on some make up to make myself look more human and less ghost-like and go to the garage to iron my clothes. The two year old continues to sleep in the next bedroom. Thank God for small favors.

The husband and I tag-team the kids and get them ready and in the Sub by 5:30. Two year old still sleeping. Wake him up as we’re gathering the last bags for the Sub and the phone rings. A nephew needing a ride to church. No problem I tell him, we’ll be outside his dorm in 5 minutes.

6pm Arrive at church in a downpour. But reasonably happy and healthy (no weird feeing in my throat, although I do munch down two breathmints so don’t make anyone near me pass out)


Sleep in till 10am. Decide that both children having figured out how to turn on the Disney Channel is a good thing. Doesn’t bother me one bit. Not one shred of guilt so don’t’ even go there with me.

Another day another goal of doing absolutely nothing. Goals are important. Just ask all the Captains of Industry, and I figure by brazenly sleeping in until 10, I’m well on my way to SlothVille, USA.

TV gets turned off at 10:30 which means, “One, Two, Three: Eyes On Me!!” But it’s all good and the kids are in good moods. My brain may feel like pudding but their little faces are THE most beautiful in the world and I do enjoy being with them. DP had me braid her hair Saturday night and she takes it out but it’s not poofy enough for her so off to the bathroom we go. I tell her that many braids would = much poofiness but she’s not too enthusiastic about this as she can’t STAND having her scalp touched. And she has me for a mother. Her loss. I manage to sneak in six braids all over her head before the wailing brings the police to our front door.

Try to jump on the tramp with DP in the morning but it’s still filled with water.

Forced to go look at e-mail on the computer and see if I’ve won any of the items I had been bidding on on e-bay. Looks like I’ve won a few childrens videos. The home-line phone rings and I answer but no one’s there….Well someone’s there but they’re not answering me. I hear some female voices chattering back and forth to one another and realize that one of those is my mother. Her cell phone has somehow dialed our number and she doesn’t know. I hear something about “flip flops” and every once and a while someone laughs. She’s out in the hills of Kentucky doing Lord Knows What chatting it up about flip flops. She never does hear me on this end so I click off.

Get an e-mail from a “freecycler” that we have indeed been awarded a free violin that I had responded to earlier in the week. Turns out someone else who had been ahead of me never showed up. Her loss my gain…hopefully. Get directions from her, which don’t include ONE street name. I know this is going to be interesting. The lady who’s giving us the violin ask that DP come along and play something for her on her violin. No problem. One budding violinist ready to go. Only had to call the husband once for the donator’s phone # and get directions directly from her. She honestly didn’t’ think there were any street signs near her house. When I meet her I realize she’s a total right brain person. I now understand Spok’s frustration with the rest of the universe.

Get the violin and manage to extract ourselves from Jumping Dalmation Grotto and Ferret Heaven. Fortunately DP is fearless around dogs and doesn’t even flinch when she’s accosted by two very large dalmations who aren’t exactly exuding warmth and friendliness. They’re not overtly aggressive but they’re dalmations, which is to say they’re “tschzed” in the head to a large degree and shouldn’t be trusted as far as you can throw them. I tried to step in between the dogs and my daughter but to no avail. Those dogs didn’t know the “off” anymore than I know what E=mc2. She managed to get inside their house with two big black paw prints on her chest. And what seemed like an hour later we managed to leave with a rather old and in questionable-shape-but-free violin.

Off to the shoe store where we find Easter shoes for her. I’m way AHEAD of the game this year and I anticipate that the Fairy Of Organized Mommies will be swooping down to award me with calorie-free chocolate brownies any minute. I’m in a generous mood and spring for outdoor-rugged-sandals for her too. She in turn talks me into buying Dadu new work boots and won’t hear anything but a resounding “yes” for an answer. So my wallet MUCH lighter, we’re off to our next adventure.

Stop at the house of a friend whose son could use some x-large diapers. DP asks right off the bat if they have any cats. She says no and DP retorts, well it sure smells like it. I figure this woman is a nurse….any marks I leave on my child, she can fix right? What in the name of all that is right is so blinkin’ hard about teaching children manners?? I send her (my daughter, not my innocent friend) to the car and hope that she stays there so I don’t have to beat her in public. I make the appropriate mouth noises to my friend and we make tentative plans to get the kids together sometime soon (when everyone’s healthy and the weather improves a bit….that’ll be right before they wheel us into the old folks’ home). Then I get into the car and give the Social Niceties Lecture. OY. I may not survive till dinner.

4pm Get home. Jump on the trampoline with DP for awhile and realize what a lovely aerobic experience that is and just how out of shape my rear end is. Humility is a wonderful thing

Put away new shoes for the girl. Dadu tries on his new boots and declares them acceptable. Bug is on outfit #5 on the day after soaking through two outfits and after two forays (sp?) out to the garden where there’s a small puddle of water in the black tarp covering the mound of dirt in my dad’s yard. This is experience is as close to heaven on earth as Bug can get but it’s just a bit too cold to let him wallow in it. So we track him down and bring inside to the wardrobe trailer.

5:30 We sit down and eat raviolis w/ the pesto sauce I had made Saturday. I missed my hoped-for-dinner-time of 5pm but I think we’ll still get the kids in the tub in time for an early bedtime.

6:15 They’re in the bath. Bug is crying and his hair is soaked. DP claims total innocence. I was born at night but not last night I tell her. Blank stare in return. I need to find my best friend on IM. Or a magnum of Bordeaux. IM delivers for me and I chat while the kids play.

7pm Kids out of tub. Bug, being a self sufficient kind of guy, gets out of the tub and saunters down the hall in all his glory and crawls into bed soaking wet. I love a man who knows how to solve his own problems. The Princess of Bubbles however stands there yelling for me to come help her get out and get her dried. What do I look like, a valet? I ask her that and get another blank stare. This girl needs her vocabulary expanded. She proceeds to have me wait while she writes her name in the bubbles with the water from her rubber duckies. “Hmmm” I think to myself, “stand here waiting for Her Highness for the next ten minutes or go back to IM w/ Glyn”. No contest. Wails from the bathroom. Fortunately I’m half deaf.

Dadu reads to them before bed. Puddin’-Brain is no help whatsoever. I sing to them and gives hugs and kisses.

The day is officially over. Put a fork in me; I’m done.

But wait, I’m not done. I’m IM’ing w/ Glyn and realize that Bug’s ear is still stinkin’ up a storm (after three weeks of topical drops and me getting in there w/ q-tips soaked in hydrogen peroxide) and I really should get him into the doc. So I figure out how to make an appt on-line w/ the ped (have I mentioned, I LOVE technology?) and we get something set up for Monday morning before therapies begin.

10pm I call it a night

MONDAY, March 26, 2007

7am Alarm goes off bright and early. I can’t do it. I’m not woman enough. I hit the snooze and hope I don’t sleep through it.

7:23 I’m up, I’m up. Big day ahead w/ a trip to the ped’s office and a full compliment of therapies on the schedule. After leaving the house we won’t be home before 1:30 probably. I grope my way to the bathroom, being as stealthy as I can as I brush my teeth and wipe the sleep out of my eyes so as to not awaken the Whirling Dirvish. She went to bed with six braids. I wonder how many are left in her head.

I go to the kitchen and put on water for oatmeal. At least they can have a hot breakfast before we dash out the door this morning. I find a big #10 can of garbanzo beans and am opening them so I can soak some of them in water all day when she comes padding down the hall….happy, happy, happy to be starting a brand new day. She has a whole new lot of words fresh and ready to be used for the day and I’m the first person she gets to use them with. I love her energy but sometimes when I’m not fully awake it’s a little intimidating.
But we’re good and she follows me into the bathroom where I finish washing my face and I drink more water.

She hears Ebony get up and her attention is immediately diverted to the 100lb. walking rug. She and Eb snuggle in the corner of the living room and Ebony starts her day with enough kisses and hugs to sink a ship. Every dog should be so lucky to have my daughter love them.

8am I go in and wake up the Sleeping Prince who is sure someone at the Main Office has made a mistake. He tries to wrap himself back up in the covers but I’m faster than he is and I kiss his ears and make him giggle. Up and at ‘em and riding roughshod over both of them in order to get them dressed and out the door by 8:45. We unfurled the braids on the daughter’s head and she declares it an acceptable level of poofiness. She looks like a wild-child. A show-stopping, head-turning Wild Child but a wild child nonetheless.

8:55 Out the door. I need to pre-back-time my life by at least :45 to get anywhere on time.

9:20 Get to the doctor’s office. Need to be much more aggressive in digging in the boy’s ear. Oh good, I can’t wait for that part of the show.

10:00 Leave the doc’s office. Get a call on my cell from another mom who’s been trying to contact me. Her kiddo w/ DS is also a boy w/ bilateral hearing loss. We have a lovely chat on the phone (first mom in 8 ½ years w/ a kiddo w/ DS & bilateral hearing loss who wears aids). We click off promising to e-mail or talk on the phone in the next day or two.

10:15 Take the kids to the new Target by my ped’s office to look for an over-the-door hanger thing. Sad but true: our family of four is busting out of the guest room we’re living room (shocking I know). And I spring for some popcorn & a slushie as a mid-morning and before-therapy treat.

11:27 Get to Hayden’s school for therapy early by two minutes for the first (and probably last) time ever. Find out the ST had called the home phone and left a message NOT to come in today because all week it’s parent-teacher conferences and school gets out at Noon. She said it’s no problem for her to work w/ Hayden but we don’t have to come in on Thursday and nothing at all for next week as it’s Spring Break. Okee dokee with me.

12:15 Get home and check the mail and find the Dansko’s I had ordered from e-bay have arrived. Happy Monday for me. The shoes feel like butter and I decide I will buried in them.

Go back to the car and finish schlepping everything out from the trunk and back seats.
Put more laundry in the washer. Take stuff out of the dryer and put it on the chair in the living room.

Make sandwiches for the kids. I eat some leftover ravioli from the night before and share some w/ DP.

DP continues her schoolwork after lunch.

We had invited my nephew David over for dinner all of this week because it’s Spring Break at college and the cafeteria is closed for the week. So I start dinner. It will involve the garbanzo beans that I had been soaking since getting up in the morning but not sure what else. I decide on Harissa, a Moroccan chickpea soup. Hearty and flavorful and easy. Except I don’t think I have enough veggie broth in the fridge. Will need to run to the store to get some. ARRGH.

4:30 Schlep the kiddoes in the car to go to my favorite discount grocery store that sells things from all over the world dirt cheap. I love this country. Hayden flirts shamelessly with the clerk there while I find what we need.

5:00 Get home and realize that 1) I don’t have all the produce I need and 2) DP needs to pull out her violin and practice. I WILL NOT go to the store again so I start dialing-for-dollars with the neighbors and come up with some celery from one of them. DP will go get it after her scales. I decide the husband can get the couple of other things on his way home.

6:30 Husband and nephew walk in w/ produce in hand

7:00 Sit down to eat. Girl-child is OUT OF HER MIND w/ excitement because her favorite cousin is over for dinner. Not just her favorite cousin, her FAVORITE PERSON IN THE WHOLE WORLD is over for dinner. Did she just see him 48 hours earlier when we took him to church with us? Yes, but that was then and THIS IS NOW. She had promised me earlier that she would practice her scales and theory before David came over and would play her songs for him after dinner. Somehow I think this isn’t going to work out as planned.

8pm The violin comes out. She’s too wound up to have a decent practice and I’m too tired to deal w/ her in a pleasant way. Enough said on that.

9pm Mercifully Jeff deals with bedtime as my nerves are shot. David’s still here and I numb myself w/ something on TV and realize I have missed absolutely nothing in not watching TV for two years.

10pm Ni-night Puddin’ Head


7:30 Wake up on my own and look forward to getting the day started. Tuesdays are our “Performing Arts” days and I’ve already decided to not ask too much out of DP in terms of expressive learning today (writing) to save her for her busy afternoon of violin & ballet. Get breakfast started for the kidlets. DP gets up shortly after I do. Take more laundry out of the dryer. Put more into the washer and set it on soak. A four-hour soak cycle would be a good feature on a washing machine in my estimation. The kids eat bowls of leftover oatmeal.

9am Ready to start school but by this time I’m fairly frustrated because I’ve had to remind the girl-child at least five times on each task to stay on the task. I pick a strategic time to lock myself in the bathroom and do some quick devotions, submitting myself wholly to the authority of God. More God less of me. It feels SO good. So peaceful. I can do this. She’s a seven year old child with lots of energy. It’s okay, I can do this with God’s help. The peace feels good. Then I leave the bathroom. Bad idea.

9:20 Get us all settled on the couch and we’re about to read some from the book of Daniel when one of my cousins arrives to pick some things up. It’s okay, we had made this arrangement. I get DP started on some school work and meet Lisa in the garage. Lisa leaves for a minute to get something out of her van and DP says to me, “What do you think is more important: to continue praying (what we were doing when my cousin knocked on the door) or to answer the door?” I say, “What do you think?” and she says, “To keep praying”. How is that I’m raising a Pharisee? I mean where did THAT come from? As blandly as I can I say, “That’s exactly what the Pharisees would have said” and I quickly excused myself to help my cousin in the garage before an exhaustive and exhausTING conversation begins. That was my first big clue that the girl child and I were on different paths for the day.

10am Cousin leaves to help my aunt with something across the street. DP’s doing great on her work and I pull Bug aside to work with him. Realize it’s been ages since he’s been able to play the violin so I have him sit on the ball and he plays the violin for a few minutes. Loves it. We go through his reading words together and he nails ‘em, except for one, maybe two words. But he’s said them (signed them) before so I’m not worried.
Then we do some cross crawls. In between DP comes in to see what we’re doing. Then I have him stack blocks while he sits on the ball. Blocks are not his favorite activity but I believe it will help him with fine motor activities.

10:10 Starving, I find some leftover ravioli in the fridge and heat it up in the microwave. As it’s heating, I look over DP’s work and have her make some corrections. I save some ravioli for her because if I don’t………well, it’s just easier to deal with it on this side of the whining about starvation

10:30 DP asks for a break and I say she can have a five minute break now because at 11am I’m going to let her watch Reading Between the Lions on PBS. She thinks 5 minutes isn’t a long enough break and I remind (probably not-so-gently) that the entire time she spends watching TV IS a break. Enjoy your five minutes now or forfeit them. Off she goes.

Bug and I go back to work on the ball and I have him practice his writing on a Doodle Art screen that he can erase by moving the cursor back and forth across the screen. This he does with great strength and determination. A few months ago he wouldn’t have been able to sit on the ball and move the peg across the board. It’s not super easy as there is some resistance. He does it over and over, smiling the whole time. He knows he’s hot stuff and it’s hard to argue with the evidence. He not only tolerates writing at shoulder level but seems to enjoy it. I move the board in such a way that he has to cross mid-line with whatever hand he’s using at the moment. He’s seems to be trading off hands lately and I’m not sure that he’s not deciding to be a lefty. It’s hard to tell. Either way I make him cross mid-line to do everything.

10:40 I get DP back on track w/ school work: (spelling time on the computer) and I take laundry into the bedroom to fold. In an effort to keep Bug contained and somewhat entertained (the two are symbiotic in nature), I turn on PBS and we catch the last few minutes of Elmos’ World before RBL.

11am The Lions are on and rather than take a shower and get ready for the rest of the day
Like I should be doing, I start dinner on the stove, knowing that we won’t be back from ballet till 5:30 or later and that I’m not going to have enough time to cook dinner and get the kids to bed on time.

11:30 RBL is over and DP is set for more work. I get her set up and now that dinner is somewhat ready, I jump in the shower w/ Bug in tow. He stays in the bathroom with me while I shower in somewhat peace. If you consider having to guard the shower doors from being opened while you’ve got shampoo running down into your eyes peaceful. But Bug’s contained and safe and that’s what matters-the essence of house arrest.

Noon Lunch for the kidlets. I finish the last couple of bites of ravioli and make them PB&J. We’re on track to get out of the house by 1:30-my goal. Have a good feeling about this. Costco Sue calls me and we lean on each other for a few minutes. I’m feeling fine. Kind of a tense morning at times (dealing w/ DP’s control issues and sassiness off and on) but for now I feel like I handle whatever the rest of the day holds.

1:00 Start gathering supplies and pack Bug’s backpack. Have DP get dressed. All is well

1:20 Take DP into the bathroom to do her hair. She loses it. I lose it more. Mother Of The Year? Hah!! I’d settle for Mother Of This Five Minutes. What a freakin’ nightmare. I just freakin lost my mind. Screamed at her and screamed at her. And she was screaming back. Should have stayed in the bathroom this morning. The lecture circuit began when we all got in the car to go to violin. I think I burned a hole in my stomach.
1:50 We finally leave for violin. The lecture continues. She’s banned from talking for the rest of the day.

5:30 Home from ballet. While dinner’s reheating I quickly vacuum the house. DP gets her pajamas on with no hassle. Probably because I have her on a very short leash. She’s still in fear of what I’ll do to her next.

No David for dinner. Can’t find him and the main desk at school isn’t answering. My next door neighbor comes over and we chat for a bit. We talk about freedom. Something I’m supposed to have. Oh I don’t know…like maybe freedom from anger. I’m reminded how far I have to go. I’m humbled. I’m trying to stay away from “I SUCK” but it’s hard. I was really heinous today.

7pm On time bedtime. Not early for DP like I had told she was going to have but on time…and that’s fine with me.

8-10 Idol’s on. Yeah. 10pm go to bed.


7am Alarm goes off. Have to hit the snooze. Have to. Need to get back to the dream.

7:25 When the husband is driving the Suburban through my neighbor’s pool and Gwen Stefani is there, I decide it’s time to end the freaky dream and get out of bed. Too much popcorn while I’m watching Idol I bet.

Fold clothes in the living room while the kids are eating breakfast. Put them away in the bedroom and pick out the kids’ clothes for today.

Kids up, fed and dressed and we’re out the door, heading for food co-op for the first time ON TIME in weeks. Get Bug situated in the car and go in the house to collect all our gear. Come back out and Hayden’s soaked through his jeans. Bring him back in the house and change him. Take him back out to the car. Go back in the house, get more stuff and come back out to the car and begin to buckle him in his carseat when I smell something. Take him back into the house. False alarm but I’m glad I checked. Maybe we won’t get to co-op on time afterall.

2pm Leave co-op. Usually don’t stay that late, but the site mgr and I had some things we needed to discuss and make some strategic decisions about and then they wanted DP to play the violin for them. She did and they did back flips. Concert lasted about 15 minutes. Girl’s born to perform.

DP had GREAT behavior and was very helpful in loading up one of the outreaches that went out. She also helped sweep and clean up. Call it a guilt offering for my abhorrent behavior from yesterday but I took the kids out for burritos and then to Toys R Us to look for some “men” for DP. These “men” are androgonous little Barbie doll type things. Definitely not Barbies…but flesh like dolls, shorter than Barbies. Can’t really describe them but when we’re at Hayden’s school on Mondays waiting for him in the preschool lounge while he’s in therapy she plays “Harriet Tubman and the Underground Railroad” with these dolls and she really loves them. Ended up leaving the Toy Emporium From Hell with an $8 baby bathtub kit, which thrilled her to no end.

4pm Pull in the driveway and feel the energy drain away from my body.

Get out of the car and check the mail, carrying that pile and as much as I can from the car in one hand while unhooking Bug from his carseat and then I open the garage door. Don’t sit on the couch….Don’t go NEAR it. The good voice wins out: I bring in everything from co-op and all of our bags and coats and drinks from the burrito place. I put the laundry from the washer into the dryer. Strip my dad’s bed and put those linens in the wash. Dust the house while Bug watches Psalty for the 147th time. He’s happy. I’m happy. DP’s playing with all of her baby dolls and is so happy she’s floating.

5pm Can’t even think about dinner, I’m so stuffed from our late lunch

Send DP to go jump on the trampoline for a few minutes before violin practice. She leaves explicit instructions for me, written on tiny little post-it notes, as to what I’m supposed to do with her baby dolls while she’s out. Apparently I’m the babysitter.

Put more clothes in the washer to soak until the cows come home. Or until my dad gets back from the Philippines tomorrow afternoon.

Costco Sue calls and we try to chat while Sarah Chang warms up the strings. I get Bug set up on his hearing aid FM system so he can listen to music through a CD player. Safe and contained. I sense a theme here.

6pm What do you mean it’s 6??? How’d THAT happen? Mercifully, the husband immediately begins mowing the yard when he gets home. Either it will help my dad’s anxiety when he gets home tomorrow or it won’t, but at least it’s mowed. I warm up some soup for the kids and the husband and sit down with them while they eat.

6:45 Husband goes off to Men’s Group. I help the kids finish up dinner and distribute Melatonin. Hayden thinks this part of the show is called, “Pretend You’re Chewing It But When Mommy Turns Around, Let It Fall To The Floor-She’ll Never Know”. I find it. The melatonin disappears for good this time.

7-7:30 Bedtime with no tears. Even read them a book. Thank God for small favors.

7:30 Let myself sit down and look at the TV listings. Idol’s on at 8. I make up my mind right then that if Jumbalaya or Mr. Chubby (his self appointed monikor,not mine, so save your hate mail) isn’t booted off tonight, I’m going to jump off the coffee table. I cruise around a little in my e-mail in-box and find out that YahooGroups is sending 15 duplicates on every message sent. Oh good…I could spend the rest of the night erasing that stuff. I find Glyn on IM and she tells me that Gwen Stefani is going to sing tonight. Oh happy day. I love her. I jump in the shower before Idol begins so yell at the judges all the while smelling very pretty. It’s the little things in life.

Glyn and I IM during the commercial breaks of Idol and are pleased with who got the boot.

I continue blogging to try to catch up with myself while Glyn and I IM back and forth. I want this blog to be realistic. I don’t want anything added. I don’t want it to be forced, contrived or manipulative in any way. I just want to see where my days go.

11pm Still not sure where all the minutes go. Feels like they vaporize before my eyes and I have nothing to show for it. Puddin’ Head Syndrome coming on again. Time to find my book and my new feather pillow.

Sunday, March 4, 2007

Just Your Average Conversation With Your Average Seven Year Old

These are the things you hope as a parent that you'll never forget but you know you will. I mean this life, these conversations I have w/ DP are just amazing. Frustrating at time. Mind-blowing (and I DO mean in the LSD sense of the phrase) and mind-numbing. But you can't tell me that seven year olds around the country, in our American culture, are talking about these things. Here's a running list of what's passed for conversation and questions between DP The Whirling Dirvish and me in the past few weeks (as best as my six brain cells can remember):

*How are people hung when the bad guys get hung? (last week while driving she wanted to know what parts of people were beaten or tortured when pirates got them or in the Bible when bad people got) She honestly wanted to know what the process of strangulation is. AAACKKK!!!

*"Oh, like when Jesus hung on the cross, he gave over all his power to us to save us from our sins" (how she explained how the"k" in the word knowing is silent but it makes the "o" say the long "o" sound instead of the "ow" as it's next to the w)

As I write this, she wants me to read "Barbie, And The 12 Dancing Princesses" with her. Hard to deny her that after a three hour Bibleman marathon for most of the morning today. Last night after church she wanted me to read some poetry to her before we turned out the lights. I'm trying to keep up here folks. It ain't easy. I think I'll take myself out for a mindless trip to my favorite thrift store after we go to Barbie-Land. And it's only two in the afternoon.

Hangin' Out In Normal-Land

This is a brag-blog. Let's get this straight right away. I'm so proud I could pop. No, that's not it. I'ts not pride I'm feeling, it's more like wonderment and awe, not that I didn't think we'd ever get to "here" but it's just when we finally got "here", I wanted to pinch myself to make sure I wasn't dreaming. And we weren't because Bug's got the haircut to prove it.

After speech therapy a few days ago, we stopped at our favorite commercial-chain-cheapo-haircut-place to visit The Best Hairdresser In The World, Trina. And she's not my favorite because she's "so good with kids with special needs". She's so good because she sees Hayden as a kid first and she just doesn't get distracted with the other "stuff" that comes with him.

When we first found Trina a little over a year ago, Hayden was in dire need of a haircut but he didn't want ANYTHING to do with her. Didn't faze her in the slightest. What did she do? Exactly the opposite of what everyone had done before her: she let him cruise around the salon and check out her chair and counter before hoisting him up onto his perch. (I know I'm digressing from my current story, but you've got to understand how we got to where we were on Thursday by feeling pieces of the fabric that was our first few meetings). So from the get-go Trina was comfortable w/ Hayden. Hayden couldn't stand to be there and looked as if he was going to jump out of his skin at any moment but Trina was comfortable with WHO Hayden was. And is. (And trust me folks, as a parent of a chld w/ a disability I'm watching every bit as much the ADULT'S interaction w/ my child in any given situation as I am my child's response to the adult-be it a doctor, a teacher, a therapist, a childcare worker at church, etc...). And I'll bet you dollars to donuts she treats every kid (and adult) in her chair the same way: assesses where they're at today and asks what they want to have done. No judging. No pity. No obnoxious questions on the first date. In short, Trina passed her first-date-test with a strong B+.

So there we were on Thursday of this past week. We pulled into the parking lot and after getting out of his carseat (his sister had told him where we were when we pulled into the parking lot and she said he perked right up and said something-I can't remember what), Hayden marched up to the door and tried with all his might to open it. He couldn't so I helped him and in the door he marched. He helped himself to a chair in the seating area and we waited. He usually doesn't have to wait for Trina and saw no reason to start that day so he was not very patient and rather grumbly. As soon as Trina was done w/ her client, Hayden slid off the chair and marched over to Trina's chair and sat down, much to the amusement of all the old ladies in the salon that day (thursday's are $10-off-perms-days), and looked at Trina as if to say, "Well come on, I'm here now so get to work". She laughed and found his booster seat. I needed to use the restroom immediately and when I came out, Trina had already started on him so I stood a few feet away next to DP and a display and decided to watch for a minut or two, until things deteriorated and Trina would need me to hold Hayden's head, to hold his hands still, to sing right into his face or any of the other tricks I've employed in order to make the haircutting process as least aerobic as possible ("as least aerobic" for the stylist I mean. I always get a gym-comparable cardio workout and leave wishing I had a brought a towel with me).

So there I stood at the ready. Just knowing, given our history in more than one but less than a hundred hair cutting places (from toney children's salons to barbers and everything in between) that I was going to be needed at a second's notice. And there I waited, with DP at my feet, waiting and watching in awe. Just jaw-dropping awe and amazement. At first I didn't know what I was feeling and then I realized, "Hey, this is must be what moms in the "normal" world do when their eight year old boys get their hair cut!!" (I get a little of this when DP gets her hair cut but that's only happened once in her life) I wasn't sweating. I was standing up-right, not crouched in a catcher's position in front of my son's face, singularly focused on Hayden's well-being while keeping him in a head lock away from the lobotomy-inducing scissors. I was standing just a few feet away in stunned silence. We did it! We found someone who really likes kids and honestly doesn't care about the labels or the outer trappings. As a result she treats him like....stop the presses here: A NORMAL CHILD. And we've managed to desensitize him to the whole hair cutting experience. He's matured and learned that these things (haircuts) happen at fairly regular intervals and it's nothing to be frightened or terrorized about. In fact if the other day was any indication, he expects that when he goes into his hair cutting place, his stylist should be waiting and ready for him. None of this waiting for another client rubbish.

I don't visit Normal Land very often and frankly I don't really care. I also don't live in "what if" Land and it's not something I sit around the fire ruminating about. Our lives are normal: our oldest child is fearfully and wonderfully made with a deep, deep love of music and all the instruments which make the glorious sounds. He KNOWS he's THE MOST handsome boy who EVER lived. He knows this because he spends HOURS in front of the mirror singing to himself and making himself giggle. Our daughter is frighteningly beautiful and crazy-smart. She has a deep abiding love of Jesus and all things related to God and His creation. She would run across a busy street if she saw a man or woman in uniform on the other side to thank them for protecting the United States of America and she doesn't have a clue that NO OTHER CHILD WOULD EVER THINK OF THAT, MUCH LESS DO IT.

So we're far from normal and our trips to the grocery store, the bank, the library and to our various therapies wouldn't be classified as normal probably because of how we look to the outside world and that's okay. The outside world is highly overrated for the most part. But our trip to Normal Land on Thursday was refreshing on some level so maybe we'll go there again, because to see how proud and happy Hayden was with himself when he got to look at that handsome boy in the mirror was worth the price of admission.

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.

Saturday, February 10, 2007

Liar, Liar Pants On Fire & Tattoo Girl

So finally after six months of being without a care provider for Hayden, we found one. After fits-and-starts with Care Provider Agency #2 (after Care Provider Agency #1 provided nothing and no one since the end of July), they brought someone by for me to meet. I should say right now (in beautifully crystal-clear, living-technicolor hindsight) I can now see and almost feel in the pit of my stomach, the fact that I did NOT listen to my instincts. Oh, they were talking to me all right but I was just so desperate for help with Hayden that I pushed aside those pesky feelings of doubt and forged ahead in my trademark, confident-despite-facts-to-the-contrary sort of way.

My first clue that candidate #1 (who later earned the moniker "Liar, Liar Pants on Fire") was not "the one" was when the case manager from Care Givers R' Us had to ask if I could go get Hayden so "Angela" could meet her (by the this time in the interview it would have been a timely, if not expected request on the part of the candidate who was in my living room, presumably to interview for a job). So I retrieved Hayden from his lair where he was snuggling with his Dad (namely the guest bedroom that we've called "home" since coming up to my beautiful homestate for a visit nearly two years ago) and presented him to the candidate. Looking back I can now characterize her introduction to Hayden as rather stiff and aloof. Then I just thought she was a more reserved and contained person and that she would warm up after she got to know us all a little better (afterall, I told mysel, not everyone on the planet walks into a room and starts talking up a storm like me....thank the good Lord).

I also ignored the fact that she didn't have any experience being a caregiver for children.....much less children with disabilities. Let me stop right here and introuduce myself a bit before any incorrect assumptions are made. My husband Jeff and I have two great gifts: a son and a daughter, bonafide gifts straight from God. We believe whole-heartedly that God chose these kids for us and that together we make a perfect, if albeit different-from-run-of-the-mill, family. Our oldest son, Hayden, is now 8 1/2 and has Down syndrome, (among some other challenges which we'll get to later). As a result of his development delays and (depending on who you talk to) disabilities, he has access to what's called a "caregiver". Kind of like a babysitter, but really more of a teacher/companion to be here with us and sometimes without me to help Hayden with things like potty-training (don't be shocked: there are many kids with disabilities who do not have bladder control. With all the challenges that comes with low muscle tone (a direct result of the extra chromosome on the 21st gene, which is Down syndrome) and the sensory issues that go along with low muscle tone, it often takes quite awhile to master toileting skills. Despite your first reaction, or maybe what you've heard, it's not a "parenting issue" and kids with DS are NOT "being babied" when it comes to this topic). Anyway, the caregiver is a position that can be a great, great help to the entire family. While Hayden is complete joy and the light of my life, there is a vigilance associated with caring for a child with disabilities that can have a comulative exhausting effect on the primary caregiver (a really fancy way of saying that Moms get burned out and tired after finding their 8 year old son playing in the toilet for the 15 time that day and it's only noon, and Mom grows weary of spoon feeding her 17 year old son with severe CP). So from time to time, we need help. I'm NOT whining or complaining and if you tell me "Well you knew what you were getting yourself into" (and it's been said to my face before and you know who you are), I will rebuke you in an instant. It's just a fact that caring for a child with disabilities takes extra of everything: time, patience, energy, willingness to be fully present in the moment, and great amounts of determination to not let the idiots (case workers, teachers, therapists who want to waste your time talking about your child's Gymboree outfit rather than work with your child who sits ignored on the floor, ignorant and mean spirited family members and strangers in the grocery stores) get you down. You get the picture.

Back to our regularly scheduled program: so we were (are) looking for someone not necessarily a legend in the field of children with disabilites but someone with heart for children and someone who believes that all children can learn. It's easy to say, not so easy to find (hence the phrase "easier said than done"). Apparently it was easy for this candidate to say to because she convinced me that although she didn't have any experience with little children, she loved children and had a niece and nephew that she doted on. She said she was very affectionate and demonstrative (something I said was important to be a part of Hayden's "inner circle"). So we agreed that she would be our caregiver. That was a Friday and she agreed to come by Monday morning and go with us to our Monday round of therapies for which she would be present to get better aquainted with what Hayden was working on.

By Monday morning I gave her a call to tell her that Hayden was now sick with a cold (kids with DS often struggle with head colds and congestion because 1) they have depressed immune systems; thank you extra chromosome and 2) their sinuses and nasal passages are quite small compared to their typical peers) and would not be attending his usual therapeutic regimine. I told her she was welcome to come over if she wanted and we could get her aquainted with what we do here at the house. So she showed up for what I presumed to be our previously agreed to time allotment: 10am-1pm. But right after coming in the door she informed me that she wouldn't be able to stay the whole time because, "The office really needs me. They're having people from the state come in and there's a lot going on and they just really need me back there as soon as I can". That was BIG HINT #2 that this arrangement wasn't going to work out. But I thought, "Maybe someone did tell her she had to be back at the office (she was hired as part care-giver/part office person to fill in for my case manager who is due to leave on maternity leave in the next few weeks) and I can just talk with the office later".

After a whopping hour on the job Angela, who by this time had changed her name to Beth (at the end of theg interview she said her real name was Angela but sh'es always gone by Beth....."whatever, just tell me what you want me to call you", is what I thought.) said she needed to leave by 11:30. I needed to run to the grocery store so I left and was back in 15 minutes. By this time she said the office had called her in my absence and told her that it was imperative that she return to the office immediately; the place was just in complete chaos and they desperately needed her. "Wow", I thought, "She's only been on the job :15 minutes and already she's indispensable. Either that or dillusional." My money was on choice B but I let it go.

I used her Tuesday without incident, although I had this nagging feeling that she was using Hayden's malady as an excuse to do absolutely nothing with him (I left with her explicit instructions and dozens of choices of activites to do with him). When DP and I returned home Tuesday evening after an afternoon away, the place looked oddly "untouched", like everything was where it was when we had left a few hours before. That's not how the house usually looks after Hayden's been in it for the afternoon. Usually you can see his trail of books, favorite toys (the ones that make music) and odds and ends around the place. I convinced myself that she had already picked up everything by the time we got home after DP's ballet class.

Wednesday was the day I really needed her. I have a weekly volunteer commitment to which I had already taken the children and I hated to do it again, especially with Hayden under the weather. And my sense of duty to my own committment won out over common sense. I was also desperate. I love my children more than anything in the world but it had been months since I had had even the shortest of breaks away from them for ANY length of time and I justified leaving him with her because she was over all a pleasant person and Hayden was safe. He didn't look especially happy and joy-filled but he was sick, so who would? So DP and I were off for most of the day. When we returned a little after Noon, Angela-er-Beth seemed a little startled and off kilter by our appearance. I told her we were just stopping to drop off some things and pick up one of the dogs to go run some errands. While standing at the counter I saw a broken DVD. She said somehow it had broken, "Probably Hayden sat on it" and she was sorry. Hmm, I don't remember giving her permission to use the DVD drive in the laptop computer sitting on the coffee table. In fact I don't remember saying she could even touch the computer, much less use it for entertainment purposes. I stuffed that nagging doubt down deeper this time and off we went for a couple of errands for a couple of hours. Hayden remained on the couch. I was beginning to think maybe she had bolted him there sometime during the morning.

When we returned (ten minutes early I might add) she looked visibly relieved, as if she were handing off a twenty pound baton in some invisible foot race. Before she took leave of us though she informed me that while I was out the second time that day the office had called yet again with yet again another "office crisis" and that they wanted her back there immediately. She said she told the office that The Mom (that'd be me) was out and that she couldn't leave right then". So then she proceeded to tell me WAY TOO MUCH about the inner machinations of The XYZ Care Provider Agency including the fact, that she would probably be called back to the office frequently over the next two months, "just because things are so crazy there". And then she added, (don't miss this...it's a BEAUTE), "And I can't just leave Hayden (she glances at him as he sits on the floor playing with a toy)". I just nodded and added some non-commital "uh-huh"s. Then she said, "Well your dad is here, maybe sometimes he can just take over when I leave". "Hmm", I nodded. By this time we're at the front door and I really hope she has EVERYTHING she brought into my house because SHE AIN'T NEVER COMIN' BACK.

What in the name of all that is right was that??? That whole thing is what I now refer to as "Not Better Than Nothing", thank you very much. I think the owner of the XYZ Care Giver Agency's ears have stopped burning by now. I gave him such a piece of my mind after Angela-Beth left that day that I thought I had truly used up my last six brain cells for the rest of that day.

Next installment? Tattoo Girl

Saturday, February 3, 2007

Hello Again

Hello Again...long time no post. Just figuring out how this new blog configuration. Think I lost my old stuff. O well.

Well, I'll just make this a test run. Is this thing on?? Hello? Hello?