The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.

It's Been a Week

The vicious icky bugs hit our house, like 3 different kinds, all in a week. First is the week long stomach ache bug, then the pukey/poopy bug, then the achy chest cold sore throat bug. Bert was the only poor soul who got all 3. Since he is still in diapers, he was quarantined to his room during the pukey/poopies, and with hand sanitizer at the bedroom door, we managed to keep that one down to one person. Everyone shared the tummy ache bug, but the Rockstar gets the award for overplaying that one during a routine physical and getting a trip to the local hospital for an ultrasound to rule out appendicitis (she's fine, a drama queen, but fine). Last but not least is the chest cold with the sore throat and achies, which Bert and I have taken the brunt of, but don't touch that dial, the chest cold is still alive and kickin' and could easily jump to anyone else in the house in a heartbeat!

Schmoozer had his BAER, and the results were 10 decibels worse than his BAER from 7 months of age. This is perplexing as supposedly conductive hearing loss should improve with age. Alas, this is where we are. On to get hearing aids.

Bert's appointment was cancelled and rescheduled for next week, but somehow I have stopped puzzling over that one, probably because I spent 3 days sleeping off a virus.

Beaner's 9th birthday came on the heels of the pukey/poopies, and while mom was in full blown chest cold with major aches and sore throat. We managed to pull off quite a day for her, though it nearly killed me. We had to cancel her slumber party to reschedule for a later date....to be determined. Grammy stepped in to save the day, and swooped in to rescue Beaner as the healthiest person in a house full of vicious icky bugs, and brought her up to Grammy's for a weekend of fun. Thank God for good Grammy's

My dear husband must get mention here for taking his 2 days off, during great steel head fishing time, and babying me and running the house. He selflessly took care of business, great and small, and kept things running smoothly while I slept on the couch. He's priceless!!!

~Edited to add: I did find out that if a child has a sinus infection, and that same child barfs stomach acid out his nose, that the stomach acid will actually kill off the nasties causing the sinus infection, thereby curing the sinus infection, not that I plan to use that method again any time soon, but it isn't worse than 20 days of penicillin~

Puzzling

My boys each have big appointments this week. Schmoozer gets his ABR, and Bert gets the results of the sleep study of that seems like it was eons ago.

On the eve of such appointments, I find myself puzzling over and over in my mind. Trying to arrange all the pieces I have in such a way that with my limited knowledge I can manage to predict the results. I have just enough pieces though, that there's a part of my brain that won't quit trying to make a valid picture from them.

It's a running monologue and it goes like this:

Ok, so during the sleep study Bert would stop breathing for what, a count of 10...I'm pretty sure that qualifies as full blown apnea...The doctor had referred to the fact that he's not really a candidate for CPAP due to his sensory issues and mentioned ENT referral for surgery depending on the results...So will his sinuses need roto-routed or does he need a hyoid bone suspension for floppy airway, or both? would he have to spend the night if he has surgery? what am I thinkin', I don't even know what his results are, they may be fully normal and I'm just going over this all for nothing, and even if I'm right or totally off the mark, it doesn't make a difference, the study shows what it shows.

or:

Last time Schmoozer had the ABR it only showed mild conductive hearing loss, is it worse this time, his behavioral audiogram is worse now than it was then, is there sensorineuro damage in the meantime, or is it still primarily conductive hearing loss? The nurse who called said he will need IV sedation, have his veins improved in the 3 month reprieve from constant poking, or is he still a hard stick? Will it be a nightmare of IV starts again leaving me feeling like a cold wet washcloth, or maybe, just maybe will the get it on the first or second...for that matter even the third or fourth try? The test adds tones that weren't in the last ABR, will they really get a good accurate picture of his hearing from this? Will the tech give me the results while we're there like last time, or will I have to wait?

It's not worry, per se. I'm sleeping fine, I don't feel anxious or upset about it. It's just running in the background, like the silly muzak in the elevator. It is just there, going on in the background, and I'm not even sure if it shuts off, and if it does shut off I don't have the switch anyway, so I just let it fade to the background most of the time, and when I'm not otherwise occupied, I play it out to the end in my head. Each time I kind of expect to come up with real answer, so solve the puzzle. Each time I end up a few pieces short, and each time I realize I cannot solve it on my own anyway. It happens every time some new test or result or referral comes along, it's just part of the elevator ride.

Even though it's in my head, I still find it odd.

Gerbils and Colleges and Bras, OH MY!

Yesterday was a big day here in the Smugglerschmoo house. After much discussion, we believe that Rockstar is totally on board with starting college by taking a year at Community College! Rockstar and I went to look at the campus, and she was excited and a bit relieved to be going there. She found a yoga/pilates class she wants to take for PE, and was surprised at the variety of offerings she could delve into. We are signed up for spring orientation!

On Saturday, Beaner announced that her BFF had a bra, a real one, like the kind I wear. WHOOOO DOGGIE. After confirming this information, and confirming that Beaner was dying to have her own bra, I stopped at Target and picked up two little teensy tiny bras for $6.99. She wanted a "real" bra, so I ensured that the have clasps. She slept in the one with the hearts on it.

Last but not least, my hard shelled, soft hearted husband who was dead set against the purchase of a hamster, came home with a gerbil. He made the mistake of informing his partner, Starfish, that Beaner wanted a hamster. You see, Starfish's wife works at the animal shelter, and is an animal freak. Coincidentally, she had a very sweet natured little black gerbil that was hand-friendly right there that we could have, for FREE! In fact, Starfish's animal loving wife, Peta, had even had a guinea pig before, and still had a cage and some feed that we could have. Alas, Ivan the black gerbil has joined our family, and Beaner was last seen soaring past Jupiter in delight.

Deaf/HOH

Last night I had what can only be described as a nightmare about Schmoozer's hearing. During this past week I met with the Deaf/HOH teacher, and got a much clearer picture of what we have in store for the Schmooze with his hearing. I was under a false impression that his hearing could be "fixed" at some point. Well, if it was "just fluid" that would be true. Unfortunately, what I choose not to hear before (though I remember being told) is that "just fluid" would typically test about 30-50 dB better than Schmoozer did, awareness of speech at 70dB. That's a shout, from pretty close like right in front of him. That's not what Schmoozer hears clearly, that's where his hearing starts....at 70dB. It's nearly impossible to chalk that up to just fluid, so it's nearly impossible to believe that his hearing will be "fixed" anytime soon.

So I have been looking into more signing, and trying to get an idea of what the Deaf/HOH community has to offer. I'm not finding a whole lot. The DS community is so large, so supportive, so wonderful, that I guess I had grand expectations. We'll see, maybe I just haven't stumbled upon the right google search yet.

Alas, all this has brought on a nightmare. I don't remember much except that the little girl next door who has a reputation as a tattle tale, came and told me that Schmoozer was deaf, and to just live with it. I remember people signing, and I remember sobbing, sobbing sobbing.

I guess this is part of coming to terms with another label, another diagnosis, another disability. From past experience I know we will be just fine, I know that this low will return to normal, and that we will get a good handle on Deaf/HOH living and do better than well.

But for now, I feel like crying.

GAR-DEN-ING

I am so excited for my garden this year! SO STINKIN' EXCITED!!!! I'm starting broccoli seeds this week, cabbage and celery next week, then my peppers and tomatoes. I plan to have different kinds of squash, rhubarb, lettuce and spinach, of course pumpkins and melons and a few big ole sunflowers for the kids.

Bert will be in school for most of the summer as his school is transitioning to year 'round, so that will free up so much of my time, and Beaner plans to be my garden helper.

Last year was utter chaos, so I left my garden largely untended, but this year, baby, I'm on it!

Wordless Wednesday - Getaway

(no, Sandy the squirrel is no relation to the Chief)

I'm Never Gonna Get Tagged or Awarded Again!

At the rate I'm going in responding to the fun meme, and the award that I have recently been tagged for, well, who would blame anyone for passing me by in the future.

I assure Many Blessings and In the Life of a Child that I will attend to the fun you've bestowed upon me very soon. Thanks for thinking of me girls!

I am a bit concerned here that there are significant spiritual issues at hand concerning my attitude and frustration with the Rockstar. Please uplift her and me both and ask for spiritual protection specifically. I don't like the anxiety, fear and distress that is ever present lately, and in my gut I know there is evil at work in my psyche. It feels awful, just awful.

Thanks.

You Can't Have One Without The OTHER

OK, so the Chief and I decided to include Beaner on our 2 night getaway. We decided to do this because we are going to a waterpark resort, primarily. The secondary reasons are that Beaner needs a break too, she needs total attention of just mommy and daddy, and because she is our only typical child.

It all made perfect sense.....until we told the Rockstar. She is still really struggling in school, and we are going during the week for good rates, she is at least 1/3 of our stress (sometimes more), and she usually doesn't want to go places with us anyway. Really I'm not sure she would even want to go, she just doesn't want to be left uninvited. I don't blame her.

What we came up with is a spa day for just her and me during graduation week. Facial, manicure, pedicure, and some serious girl time. I think we're all set. Phew!

What Have I Done?!

Yesterday, on the heels of a couple more snow days in which we were all blessed to be stuck inside together, Beaner made an announcement, after dinner, during dishes.

I'm never, ever, ever having kids!

Me: Why not?

Because all you ever do is work. You work to change diapers, do chores, do laundry, pay bills, cook dinner, do dishes (smile inserted here). No WAY I'm gonna do that. (yes, she was helping with the dishes)

Great, I have an 8 year old who thinks my life is utter drudgery, from first hand observation.

A New Spring in My Step

I knew that having my typical daughter, first son with DS, then adding a teenager and a second son with DS would not be an easy lifestyle. I knew that when my husband took a job that had him living outside of our home for 10 months, that I would be spread even thinner. Then when Schmoozer started having medical issue after issue, and Bert's behavior would not get any better, and Rockstar just kept having trouble, I started going down hill. I got tired, very tired, then exhausted, then depressed.

I am familiar with situational vs. clinical depression, and I knew that I had a severe situational depression, but never got treated. After all, how do I find time to take care of me?

Finally, with Schmoozer mostly under control and just hearing aids left in a long line of ailments, with Bert settling in and just awaiting the results of the sleep study and whatever intervention that necessitates, and with Rockstar settling in and getting ready for college, I have a wee bit of time to indulge myself. I am finally getting treated for a neck issue that I've had for years, and feel so much better. I am seeing easier days coming, and man does it feel good. My burden is lightening little by little, and it finally feels manageable.

The corner turned when I found out that we will most likely have zero out of pocket expense for Schmoozer's hearing aids. (Picture me with a giddy mom face here).

....and did I mention that the Chief and I are getting away for a night. To a resort with an indoor waterpark. :-)

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

Shooting Rockstar

~This post includes some feelings that are difficult for me to admit to myself even, let alone to post for others to read. Yet I feel it will be very therapeutic for me to examine my thoughts thoroughly enough to post them here, so here goes.~

Some of you have been reading here since day one, and know how I got my teenager, others don't, so here's the Reader's Digest Condensed Version:

In the fall of 2003, we got a phone call that my SIL, the Cheese, had police at her house, and was being taken to jail. Phil, my FIL, called the Chief and asked him to come manage the situation, which he did. We took the Rockstar and her little sister home with us that day, and they stayed for about 2 weeks. At that point in things, CPS was notified of their home situation, and came on the scene in a very weak and pathetic display of impotence.

Upon her release from jail, the Cheese promptly dispatched her husband to our house to get the kids, against the wishes of CPS. They returned home, and stayed until January of the next year. At that time, the Cheese was nearly at death's door from the tolls of her addictions, and once again we took her kids home, and the Rockstar has been here ever since, but with her little sis having a different dad, little sis went back to her daddy after just several more days here.

At that point, CPS filed with the court, we were ordered to get our Foster License, which we did, and the proceedings began. After about 15 months, the Rockstar was ready to go home, even though we were nearly certain the Cheese was using again. Alas, that never happened, on June 14, 2005, the Cheese succombed to a heroin overdose, and the Rockstar settled in here to stay.

At that point both the Rockstar and I knew our relationship needed to change. She had resisted connecting with me, since she felt like that was betraying her mom, but that had changed, and my role needed to too.

I started off with a bang, I was nurturing, gentle, open and warm, but as Rockstar's feelings waxed and waned, I wondered if I was overstepping, and backed off a bit, only to "play mom" in fits and starts when the need was apparent.

Meanwhile, she was determined not to need me. She didn't want to lose someone she needed again, so once again, she kept her distance. Reading the cues, I backed off again until the next time she allowed herself to become vulnerable enough to want or need me. This is how it has gone since then.

This past few months, I had made a real effort, despite the stiff arm I sometimes got in return, despite the intermittent rejections, I just kept plugging. I was finally making real forward progress, and was so proud of myself. It's not easy to bond with a teen on that level. The cute antics, sweet hugs and kisses of childhood are long gone and have been replaced by moodiness and attitude, and the silliness that does come along often is more obnoxious than cute. But it was working, we were getting there, slowly, but getting there.

Then exams came. When the failing grades came home she was defensive, like a porcupine backed into a cave. She was not letting us near her without all her quills at full staff. I tried in my gentle way to help figure out what she needed to do differently in order to pass next time, and was shot down, so on cue the Chief popped in.

I will not pretend he was gentle, but he was on topic, and never unkind. She went off. She attacked him, and threw slurs about me, not knowing that I was near enough to hear every word.

Now, weeks later, I am not sure how to recollect and go there again. There is such a distance, such strain, but I don't know how to put myself out there again. To risk the rejection I knew would be there, was one thing, but this is a whole different level of resistance, emotions I never knew were there. I know what she said was in anger, but I also know that there's more than a morsel of true feeling there, and that it's likely what has been behind the resistance all along.

I know she will not take the first step, and I don't know how. My energy is drained. Bert is up most nights at least 2x, and often many more. Schmoozer has the ongoing hearing problems that I have come to realize need tackled, and that will be no small task. I have Beaner, who gets too little of my left over energy in the first place, and I just can't find anything left to regroup my emotions and get back on track with the Rockstar, which alone would be a monumental emotional effort.

There is so much of me that says she is nearly 18, off to college, and to just let it go, to just maintain for now, and try again to build a relationship once she is out of my house, not so omnipresent. I just don't know, maybe that's the right thing anyway, but maybe she needs me to, wants me to push some more. I just don't know.


__________________________________________

On another note, she has finally agreed to psychiatric treatment again, though resistantly. It seems that her mental illness is more far-reaching than I had realized. I hope and pray that with proper treatment, this will become easier, maybe she will be more willing, more able to connect back with me, maybe.

She is hesitant about treatment. I wonder if she just doesn't know who she is without the mental illness, and feels vulnerable to think of having that removed from her personality. Just a thought.

Snow Days

The girls have had 4, Bert has had 5. I need to get things done, and in 11 degree whether and blizzard conditions, we can't even get outside to blow off steam. Somebody send me some Calgon!

Patience

I have always wanted to be a more patient person. Patience is not in my nature to any great extent. In my quest to gain more patience, I have learned that the road to patience requires patience, if you KWIM. In other words, you don't learn patience in a hurry.

Is it wrong to pray, Lord, I need more patience NOW!

Wiggle Tooth

Wiggle tooth has been all the topic of conversation in our house of late. Seems I'm not the only one around here who is blown away by our little Mister loosing a tooth. Did I say loosing? I meant LOST! There is no more "loosing" about it. Here is our photographic catalog of the experience:


Bert graciously says "CHEESE!"


There is a tooth, a teeny tiny tooth, somewhere in the Ziploc
And, Yes, there are about a billion dishes on my counter, there always are.



Mommy is a good sport and let's Bert take one for being such a good boy!

It's the Little Things

I can be brave through IEP meetings, doctors visits, surgeries and the like, but still find myself at a total loss over something little. That something, *this time* is a loose tooth. Bert has his first loose tooth. He's 5-1/2, it's right on time. But it's not. My son is aged 5-1/2 years on this earth, but he's not a five year old, not a four year old, maybe approaching 3, but really he's pretty much a 50 pound 2 year old. I can see that on developmental tests, I can tell by the way he talks. You know, I even like it. There is something wonderful about the 2 year old mentality. But when his own body betrays him. When his development actually demands that his actual age be acknowledged, it sends me into a tailspin.

On Saturday we were hanging about in the living room. Bert was sitting by me and we were making silly faces. He started drooling, as has been happening since "wiggle tooth" first made it's presence known, and I started crying. Plus-sized, full blown crocodile tears. I had no foreknowledge that this would happen, no notion that wiggle tooth would demand this of me, but it did.

My son should be in Kindergarten. This should be a rite of passage that he anticipates with high expectations. The tooth fairy should be all the rage in our conversations. He should be wiggling his own tooth and doing his darnedest to get it out for some booty.

How on earth could a tooth have that much effect on me?

Feeling Boggy

Some of it's the January BLAHS. Some of it is the fact that between my two boys I haven't had a 2 good night's sleep in a row in months (years?) Some of it is life with special needs kids....3 of them. I feel like for every time we celebrate a success or victory we are bogged down in yet another miry swamp that we must find our way out of. If it's not one, it's the others, and if all 3 special needs kids are doing well then Beaner automatically has a problem.

My sister, a mother of 6 typical kids feels the same way most of the time, so at least I'm in good company!

Simply Amazing

This week I found out that one of the most overwhelming, horrifying events of my life has turned into a blessing.

Bert has been visiting a multidisciplinary behavioral resource center where he has gotten psych evals, PT evals, sensory evals, and stands to get OT and speech evals. For years extra speech therapy is something we've known he needs, wanted for him, but simply could not provide financially. The speech therapists at school have varied in expertise, energy level, and willingness to got he distance for him, and his current SLP is above and beyond the others he's seen. Yet it's only a bit of time each week, and with the difficulty in communication between school and home, follow through is just what I can manage to figure out.

So now, after his pysch review, we have realized that Bert's birth (as written here) is his ticket to speech therapy. Down syndrome is a developmental disability. Insurance companies won't and don't usually cover therapies for developmental disabilities. But alas, insurance companies do cover therapies for traumatic birth and hypoxia at birth, both of which Bert had. So here we are, happy to find out that indeed, we can get his speech therapy covered.

Now, enter our local Down syndrome speech guru. LK has partnered with the Down Syndrome Association of West Michigan and Talk Tools and has educated herself as a specialist of sorts in speech issues of children with Down syndrome. If you have DS in this area, she is the SLP to see. By amazing blessing, Bert has been placed on LK's schedule, and will be evaluated and treated by her, courtesy of our insurance. It is simply amazing, overwhelming. The Holy Grail has been handed to us. I am grateful beyond words.

Now, as a kicker, once again I have found the opiate of validation. You see, our psychologist realizes that kids like Bert don't *just* respond to normal or even excellent disciplinary measures. That even the most together and consistent parent cannot always manage a child like him, and that when you have a child like him you cannot always be the most together and consistent parent. We are in a marathon, not a sprint. Bert will not be sleeping through the night tonight just because I use the right interventions, Bert will not behave in public this week no matter how good of a mom I am. But someday he can and will, and now I have another partner to help us get there. Oh, Praise Jesus, we'll get there.

This is What I've Been Doing

I made Bert a Sensory Tunnel. It's supposed to resemble this one,


but we're working on coming up with handles. Rather than paying $190 + shipping, (yep, I had to pick myself up off the floor after reading that price.) I made one for about 1-1/2 hours worth of shopping and work and the cost of material. If you want one, email me aleejom@yahoo.com) and we'll see what we can do, I'm thinking of selling them for ~$40-$50. This one is 9 feet long, but the size can be adjusted, as can the color.

I also can make a weighted quilt. :-)