I was on time...

No actually, today was mostly good. Had an easy time waking up... and actually woke before the alarm... squeezed in the cardio with weights (not to sound impressive as it's only 3s and 5lb) before the kids had a chance to assault my kitchen for breakfast. I thought I was doing really good! Then I noticed the cell phone wasn't connected to the wifi... memories of last month's data overage charges fresh on my mind, resulted in spending the next hour one my cell phone with Verizon when I finally figured out the internet wasn't the only thing not working this morning. Though having the land line go down is actually somewhat of a relief. The only folks who call my house are usually scammers or have no intention of actually talking anyhow.

Still... we had a great day! Like things just went smooth... mostly. I never go around to folding the daily dose of laundry, so that's backed up, as is prone to happen if I don't wash, fold and put away ever. single. day. even. Sunday.

Still... good speech and OT session.

What I'm noticing though... life is hectic, and it just is what it is, and I'm okay with it. But the sight of us, even in our most perfect of hours, can still overwhelm other folks. I don't know what I can do about that. I'm sorry it worries or upsets them, but there's nothing I can't think of to remedy that for them.

I'm not sure what to make of an assertion a friend posted several weeks ago. It was suggested that "young" moms who refuse help are denying other's works of charity... or something like that. I've tried to wrap my head around it, but can't help but feel entrenched on the side of the young mom who prefers to take her herculean task on by herself rather than accept help... especially if they're strangers. And as chance would have it, since this came up, I've had two happenstances... only two mind you where a stranger verbally offered to help me, but I wasn't in need of help.

The first was last week as I was rushing the gaggle of kids out of the van, I'd managed to score a parking spot with a vacancy next to the sliding door. Just as I'm loading my 2yo onto my back in my soft structured carrier (SSC), a woman turned her car into the open spot, where I was standing. Being mid mount I can't really get out of her way... and she stopped, asking out of her window in all earnest, "do you need help with that carrier?" All I wanted her to do was not hit me with her car. The last thing I "needed" was someone to try and help. I've trained my big kids to check me, and usually ask them to "tug the top" of the SSC body if I sense it's not all the way up. So I really, honestly, and truly do not "need" help from a stranger. Am I being uncharitable? Selfish? Really? I can't quite figure out what I can do about it... being a bit busy trying to ensure we get out and back without incidents, I guess selfish and self centered is how I am.

Today, I made an extra effort to sound grateful, but sincere when a woman dashed across the lot (mind you she still had her arms filled with her own bags) to ask if I needed help loading my stroller into the van. With the above posting in mind I told her, "No, (paused with smile) I've got this, as I collapsed the stroller in 2 seconds (cause it's really one of the easiest on the market), and "I promise, this isn't too hard, but thank you so much!"

Besides, if I don't put it in "just so" it won't fit in the space behind the seat... even my husband can't always remember the exact way it goes and he'll resort to removing the top seat to make it fit. So, honestly, it really is easier and faster if I just do it myself. 

But I've noticed a distancing from folks... and I guess it could be me, or them. Whether I'm inadvertently putting off distancing vibes even though I don't mean to, but bringing myself to cinch in these trailing relationships, that seem so far away now... well I'm not sure I know how, and doubts of whether they even want to be that close linger. Upon real honest contemplation I think I might just be too busy and caught up in my own little world (that of my activities of daily living)... when I think about what I have time to do to improve upon the friendships I regret there's very little time and capital.... and yes, sometimes I do feel like it's a lack of $ or status that might also be a hindrance too... and well, not much I'm going to be able to do about that at the moment... though it doesn't stop me from thinking about it none the less.

I've trying to read, Different... Not Less, a compilation of stories written by older adults on the Autism Spectrum. To be honest, I've finding it challenging because it makes me wonder if there's a difference between the "Spectrum" and having introverted tendencies... and if being introverted is just another rung on the "Spectrum" ladder... because I can relate to some of these folks... somewhat. I started reading the book to try and understand my son's diagnosis, but now I just feel, for lack of a better word, unsettled.

Since changing our therapy day, our new time slot exposes us to other children on the "Spectrum" who are more profoundly affected. Today I watched a pre-teen crawling around on the floor repeatedly punch keys on his augmented communication device. He's non-verbal. Having heard stories of folks with severe autism breaking the communication barrier to alert the world that they do in fact think and have awareness, I couldn't help but feel a little distressed whenever he punched the buttons for the words "help, eat, and stop." Was he really in pain, or something... or just stemming? I wondered how his care givers could tell... Inside wondering what it must be like for him to go unable to really communicate with others. Also I wondered how ought I respond? Should I pretend I don't notice him, or smile? Say something should he look my way? I can see other, more out going sorts, who just have a natural ability to engage folks in conversation or in this case, one sided communication. I don't think I have that gift.

My son can speak, formulate sentences, and even writes. His spelling is actually pretty good, but it's clear that there's more in his head than he can find the words for.... and quite frankly, I feel the same very often as well. I've often struggled with trying to formulate my thoughts into words, and in a way that is conveyed in a way I'd intend...sometimes there's a misconnect, and I know how uncomfortable that can be.

But today was a full, and blessed day... honestly and truly.

Sensory: deep pressure seeking

Our OT therapist noticed that my son seems to be seeking deep pressure sensations. She's advised him to try wall push ups, yoga poses, and activities at home. While in therapy he utilizes the foam pit, vibration standing board (thing), and large swings to fulfill this vestibular need. However, he's very tall, and our space is somewhat restricting his movement. The other day he hit his head on the doorway going down the stairs... something I hadn't even though was possible, but indeed he just barely clears it when he going down carefully... let alone if he forgets and bounds down the stairs. Whack!

Anyhow, he frequently wraps his finders on the walls as he moves about the house, which our therapist also thinks is a sensory seeking behavior.

He can breath just fine, so
no cause for alarm, please!
 He just likes to hide inside,
but usually has his head
outside the body sock.

So I asked her for more ideas for how we can accommodate is special needs in a therapeutic way at home. She showed me a body sock, and had him try the largest one they had at the clinic...which was still a bit too small. Still he seemed to like it a lot. So I decided I'd make him a bigger one.

Used a 2 yard cut of Nylon Lycra four way stretch spandex from Hancocks Fabric, I turned the fabric and folded it in both directions and asked my son which fold he liked best (long and skinny or wide and short) and he chose the width folded down for a wider horizontal and a bit shorter vertical). Mine doesn't have as many seams as the one our therapist owns, and my seams are princess seams for strength, but not necessarily beauty.

So as soon as I finished it, he climbed right in and was all about it. Kind of weird, uh? But if it helps him, it's worth a try. It cost about $25 to make (material, thread, and soft elastic webbing for the opening).

No breaks

If we're going to take any time off from our studies and learning activities it's going to have to be scheduled... and I haven't worked up the nerve to schedule down time... though I know I should. But.. but.. but...

There's so many new things we're integrating into our routine, one of which is Integrated Listening Systems (iLs), which our Occupational Therapist began with our oldest a couple months ago. We're increasing our sessions by doing more at home.

The regular task of washing clothes, cleaning, cooking (at which I genuinely lack talent), and keeping little folks safe remain. 

While doing dishes my toddler brought me this Mei Tai carrier I completed a few days ago, and wanted some up time. Given his baby sister was sleeping happily in her swing I was glad to oblige. After a minute he whispered over my shoulder, "Jesus." At which I realized he was identifying our statues. So I asked him to name everyone else in the Holy Family. He said, "that's Mary," and as I pointed to the tallest figure, he insisted, "that's Jesus." It's actually Joseph, so we had to work a while to convince him of this, because he wasn't buying it. Finally, he conceded that Jesus was the baby, and the tall statue was Joseph.

Drain Pain resolving

It's been a while since this project began. With the bathroom redo and preceding our laundry room and kitchen drain issue, we had to cave and ask our home owners policy folks if there was any way any of the drain and floor demolition was covered. Turned out that the dig up and repair of the floor is covered, while the plumbing wasn't. So we pressed ahead with the pipe repair and hoped that reimbursement would help me pay down the debt I'd accumulated on the credit card. Then the claim seemed to stall out. The adjuster wanted more information from the plumber (who I'd already paid) and the estimate to replace the tile seemed out of our reach. I'd come to terms with not receiving any assistance on this particular mishap.

However, then the flooring company called to find out where we were at with our decision and we called our insurance to see if they ever made a decision. Our original adjuster never returned our calls and seemed to have disappeared off the face of the earth. Luckily, another person pulled up our claim and informed us that it had indeed been approved, our deductible was already met (thanks to the expensive floor demolition) and that the rest of the work would be covered. I just needed to select new tiles.


Today, the work is about half done. The slippery laundry room tiles are no more, and the workers seem to be doing a very nice job thus far putting down the new tiles. I do like texture and natural stone looking tiles. These shouldn't be near as slick as the previous floor. I truly wish we could afford to have the kitchen floor done too... Heck, I'd love to just rip out our blue bath and the kid's white bathroom and go all Tuscan earthy in those rooms too. I'll remain grateful for the bits of lovely we are receiving.

       ***************************************

It's about that time of year when I start to think about our progress with the kid's schooling and therapy. Admittedly, I've been somewhat frustrated with the slow gains in speech, feeling as if we'll be doing speech therapy for life without any hope of ever graduating. Our therapy center offers a few alternative treatments and I asked for more information a couple weeks ago. I just want to try something different to see if we can start making more progress. While there are more options, insurance won't cover them. Yet, I'm feeling like we "need" to do something more and am considering introducing Interactive Listening System (iLs)  into our occupational therapy regimen.

Having had tremendous success with other neuroplasticity focused programs before (FastForWords Basic, now discontinued) my son's verbal skills gains correlated with the time he spent working on the FFW program yielding major language expression and comprehension gains, so that he actually graduated from the private speech we'd accessed when he was about 7 years old (perhaps because they didn't have the ability to work beyond basic articulation issues). It seems that these sorts of treatment modalities can work on certain kinds of kids. The other day I watched my son working on a level 10 on the Trouble Brewing game on Lumosity and was astonished as the speed and skill he had gained making as many as 8 different beverages at a time.  With three different screens, only one showing at a time, he had to flip back and forth between them to view the orders, load two different machines, and return to each cup before they overflowed. I was astonished at how fast and efficient he was. Keeping in mind that this was only a computer simulated situation, I still couldn't help but wonder if he could do these tasks as well in real life. If he could, maybe there was hope he could attain employment one day.

Hammock for Easter

Our OT therapist often comments about how much my oldest seems to enjoy his time in the "taco swing." I've never seen it, but she says it's like a large hammock which he can wrap himself up in, and receives sensory input from all around...or something like that. The one session I was able to attend I could tell he did need certain movement input to calm his system. Unfortunately, he's so big, and our ability to provide him with some of these opportunities is somewhat limited. I'm certain he'd really enjoy a large trampoline, but it would need to be quite large, and my mother hen fears dictate that we would need a super duper "safe" trampoline, which isn't cheap. However, some of the less expensive things I've been able to procure for him are balance balls, balance board, and of course I try and arrange our home in a way that maximizes open floor space for whatever movements or stretching one might feel inclined to initiate. He likes to do P90X3 with his father, so that requires a lot of open space in front of the T.V.

The view from the hammock

Our Easter gift to the whole family was a new nylon hammock for the back yard (which will be brought inside when not in use), and a hammock chair for our swing set (though it's not a swing). Both have been very popular this weekend and the kids race to them whenever one has been vacated, so that there's almost always someone nestled inside (sometimes more than one). I did manage to snag a few minutes in the hammock myself today and enjoyed the scenery.

We all spent a lot of time outside on this glorious Easter day. The temperature was perfect, and the trees haven't quite hit their pollen producing peak, so allergies weren't overly aggravated. The industrious kids took to building a fort like house with our tomato stakes and bamboo shoots. My husband taught my daughters how to make deviled eggs using some of the dyed eggs (which nobody likes to eat, but everyone wants to make anyhow). Meanwhile, I started my zinnia seedlings for two of the three colors I have planned for our yard this summer. Then I capped off the time outside, by getting started on giving the dog her springtime clipping...which will have to be continued another time, as it's taking a long time to cut through the long winter coat without taking it all off. It would go much faster if I weren't using a guard to keep it from becoming skin tight length. I'd like to leave a little bit of length on her, as temperatures are still fluctuating. For now she looks rather ridiculous, with somewhat of a reverse Mohawk look.

Drive

A couple weeks ago my son was moved out of the faster lane and into a slower lane during swim practice. He was told it was because he was taking too many breaths and not because he was going too slow. I waited till after practice to verify with him that I'd heard correctly (yeah I was sitting right behind the lane, where he'd dropped his junk into a plastic chair which is way more comfortable than the bleachers). The demotion didn't seem to phase him, but it sure got under my skin.

Later, I did express my concerns with the coach in a carefully worded note, and encouraged her to focus more on helping with streamline breathing instead of decreasing the number of breaths per lap... I couldn't be mad at her specifically, because it's quite common for swim coaches to encourage swimmers to build up this sort of endurance and often taking breath is a bit disruptive to the streamline and flow of the stroke. However, given that my son was already having issues with fatigue mid-practice and he has a hereditary anemia, my feelings were quite strong in that I never wanted him to try and decrease his breathing, but to work on making his respirations mid-lap as efficient and streamline as possible.

In college I was incredibly fortunate to have a coach who thoughtfully worked to help his swimmers to improve their techniques instead of over emphasizing rigorous workouts. My brief career as a high school swimmer ended because the coach was overzealous in his insistence of working hard for hours on end. He demanded we practice before and after school, and succeeded in driving me to burn out. A few years later, finding the drive to swim again, I was so fortunate that quite the opposite in college the coaching was much more balanced and my times and race results were far better. While I didn't know then that I had hereditary spherocytosis, I quickly learned that when I didn't breath enough, I would have symptoms of hypoxia and my body let me know I had to breath more. Instead of breathing less, I learned to breath better. There's a moment in the freestyle stroke, when you're lifting your arm over your head, when the water will dip down, and allow you to slurp a breath of air with just the slightest turn of your head. As long as you're swimming in smooth water, you can breath as much as you need to without loosing any momentum at all.

As you can imagine I get rather engrossed and nostalgic with rather strong views on how things ought to be when it comes to swimming. Given that it took almost 12 years for my son to learn to swim across the pool without touching the bottom, I'm always amazed to see him swimming. What I've noticed though, is that while he seems to look forward to swim more than anything else that he does in his daily life tasks, (that is to say he isn't overly excited about it, but gets ready and attends swim with hardly any effort on our part to get him ready) I don't think he's got quite the same drive I had when I swam. It's not bad, it's just different and I have to work hard to keep that in mind!

When I watch him swim I can see potential... or I feel a desire to see him swim in the way I did. I liked to race, and I liked to win, and I usually swam pretty hard all the time. It was one thing I was pretty good at... intuitively. I never had a swim lesson, and was able to join a swim team when I was in junior high and prove I belonged in the faster lanes (not always the fastest, but never the slow lane). There's something exhilarating about swimming... for me the black line on the bottom of the pool is kind of like the black lined figure circles I'd spend countless hours tracing at the roller rink. Back and forth, around and around...over and over again. Rhythmic, methodic, stroke perfection and stylized cylindrical balance with unwavering edges... perhaps it was my therapy. Something about these activities helped me develop into who I am today.

Personally, of all the things we do, I think swimming has been the best therapy for my son this year. Swim teams around here was shockingly expensive, so that's why we haven't been able to pursue more than he's doing now. I see the most progress and the most promising results from his time in the pool. If I had my way I'd divert all the money being spent on speech therapy and invest it into more swimming opportunities. 

Quiet room

We spend two hours in the waiting room of speech and occupational therapy every Tuesday morning. My eldest son usually slips into the quiet room while he waits for his turn as he doesn't like the ruckus all the younger kids make. For months now I've endured the constant buzz of numerous conversations mixed with the sounds of siblings playing, and I leave speech feeling very taxed. It was getting more and more obvious to me that part of my loathing for our time at speech was the noise we endured in the waiting room during the first hour. While the second hour is not as noisy, by that point we're so overstimulated, that we're still miserable and exhausted.

Yesterday, like an epiphany, I made up my mind that we would all join my eldest son in the quiet room, at least for the first hour. Instead of just sitting or trying to read stories to my younger kids through all the noise, I too would take advantage of the quiet space the center has provided for clients who become overwhelmed.

This tactic seemed to really help. My son was able to complete a vocabulary assignment while he waited (he needs to be prompted, which requires my constant attention, to continue his work or usually nothing will be accomplished). His sisters also exclaimed that they found it easier to complete their assignments as well. Hiding in the quiet room may well be an enduring practice from here on out.

Coming up short

Our new therapy place doesn't believe in closing for snow. Our previous therapy place followed the public school closing decisions, and so unlike last year, the public school hesitated on calling it a day and didn't even bother to implement a delay. So, even though the roads in my neighborhood were covered in snow, and the hilly parts a bit treacherous, we pushed ourselves to make it to our appointment on time this morning. I was not happy about going out in this weather, not one bit, and was still harboring quite the grudge all day for my efforts. I noticed that many of the other families who usually have appointments during the same time were absent today. I began to feel that I'd done the therapy place a big favor in making my appointment and was ever so put off when they insisted on payment again today....

Our previous therapy place was a lot better about how they did their billing. Perhaps it's old school, but I rather prefer to get my bills in the mail, once a month so I can attend to them in the privacy of my own home,  late at night when all the minions are snug in their beds...not in the waiting room, every week, at the therapy place  the moment I walk through the door. The new therapy place's billing manners seem so absolutely rude to me, that it is leaving a rather foul impression. If it weren't for the wonderful therapist I'd be dumping this new place in a hurry.

So of course I'm already in a foul mood, having just written another hefty sized check, smack in my face, after already being upset over my snowy morning drive...when who should call, why the creepy bathroom remodel company that seems to think it's okay to demand more money after the final invoice and a paid-in-full check clears the bank. Seriously! Given my patience meter was already pegged, I informed them they should be receiving our response in a letter (certified from the JAG) any day now, and I wasn't going to continue this conversation as I was at an appointment (not a lie either).

We have another plumbing company coming to give us an estimate tomorrow, with only one of two estimates returned thus far, I'm really feeling squeezed right now. Thoughts have been churning all day on what must be cut to make room in the budget for this plumbing issue. First, I called and canceled my dental appointment next week, as I was going to get a night guard (I'd grown tired of hearing what a grinder I was and had agreed it was prudent to get a guard to prevent further damage), but decided that was one expense I could do without for a little bit longer.

Still, that didn't seem like it would be enough, so I notified the girls that since they hadn't cleaned their rooms this weekend, as I'd warned, I would have to tell their dance teacher they wouldn't be doing dance next month...and thus the rest of the year since it's the beginning of the build up to recital... Honestly, I can't see myself making out the check for all the dresses at the end of this month given our plumbing issue... so if they won't even clean their room, why am I knocking myself out taking them to dance? This of course feel awful because the teacher cuts large families a fantastic break on the classes, and the monthly tuition is not at all unreasonable, instead it's a great bargain, especially given the number of classes the girls are in and for this area. It's the recital dress cost which I dread. Staying in classes after January and not doing the recital is a waste of time given that's all they work on after that point on. So it's a deadline I'd set and the girls chose to ignore my warning. I gave the teacher a heads up we might not be able to continue, though I only told her it was because of our plumbing issues and I'm not sure how badly our budget is going to be affected, but likely adversely.

Don't feel bad for the girls... their teacher wants them to stay and told me not to pull them out if it's a money issue. I thanked her and just asked if she knew of a good plumber (she's lived in this area for a very long time, she would know), and indeed she's going to get me the number for a master plumber she knows and trusts. So if things start to go more smoothly, and the girls clean their room, then perhaps they won't have to quit dance for the rest of this year after all. However, truth be told, while I love for them to have this activity in their lives, this taxi mom is getting tired and might need a break for a while.

The sandy beach bathroom

We used to call this our pink bathroom, but now it's the sandy beach bathroom in honor of the tile name. After another long day the workers pulled out with just a few odds and ends that will be attended to sometime later this week. By tomorrow everything will be dry enough that we'll be able to let the kids take a bath in the new tub. Since we've been showering them in the "blue" bathroom we've established a routine which will have to be altered once again.

Being Veteran's Day, my husband accompanied us to our regular speech and occupational therapy appointments. Watching the kids allowed me to attend my eldest son's therapy sessions that I might glean from whatever methods his therapists employed. On the whole I'd say I was surprised at the way his posture changed during his sessions. While he's generally cooperative, he seems much more prone to fidgeting during speech. Nothing was beyond his capability, but he seemed bored by the speech activities. You could clearly tell from his body language how engaged in the subject he was. Finally towards the end of speech he began to sit forward more and lean into the subject matter. I noticed a lot was accomplished in a shorter amount of time, than say at home, when he was being engaged with some activity of some sort mixed in with the speech tasks. For example he got to spin the spinner to select the questions. Given the sensory motion of the spinner it seemed to satisfy this need to move something while sitting still.

Occupational therapy is all about moving, and I was surprised to see the amount of movement he craved unleashed upon the giant "cloud" pads, and the bolster swing. Lately, he has been rather sluggish, but this past week he has begun to move again. One morning he woke up early and got a jump start on his chore (emptying the dishwasher). This afternoon he asked his father if he could earn money raking the leaves out of the gutter in front of the house. He pulled the blower out of the shed all on his own, and proceeded to bag almost four bags worth of leaves, until it became too dark outside for my comfort. Later he presented his father with an invoice for the work he'd done along with the request for the pay he was due. So his level of initiative seems to be flowing at the moment after a long spell of ebbing.