disclaimer or something

A mummy-hand holding, (former) biker gang affiliating, hippie influenced semi crunchy granola mom's ramblings and reminisings on an off-kilter life

Monday, September 22, 2014

breaking the law sippy cup edition

All before my first kiss, period, school dance...all before middle school, I had done the following (to become their own blog posts someday)... 1. Got married. To my cousin. 2. Drank alcohol and skinny dipped (and learned a lesson about peeing in the woods) 3. Told a lady to take her top off 4. Dropped the f*** bomb. Bad words? Huh? 5. Used power tools and weapons. Unsupervised. 6. Gambled. And won money! 7. Lost friends due to use of explosives. Legally of course. 8. Got high. 9. Totalled a golf cart because I shouldn't be trusted with things that move. 10. I ran from the cops. They ended up at my home anyways and my parents were surprised they wanted me. 11. I was the schoolyard bully. I might fit in girl's size/age 8 clothes but my puny 12 year old self struck fear in the eyes of boys. Yes, boys.

Saturday, September 20, 2014

the first years are the formative years

I often hear about "early intervention" for special needs kids, and how the early years are formative. As a teacher, I know the importance of early intervention and would kind of silently judge parents who ignored such advice, that is, until I joined their ranks in a way.

I have a son with many small issues, "holes" in his growth and development, as his speech teacher says. And since every mom is her own worst critic, I blame myself for it all. Man...I gave him his vaccinations without questioning? He drank some formula! He eats foods with Red #40! I coddled him too much! TV is rotting his brain! Crap, I forgot to read him a book for an entire week! I yelled at him when he pinched me!

But then, other times, I know who to blame. Times like today make the blame very evident. The System. The System is to blame.

At age one and a half, I knew something was up. The numerous infections, near non existant appetite, head banging, lack of words or signs, the clingyness... so I asked around and everyone said, call the regional center, they are the only ones who can help. So I did. I spent my entire prep period calling different numbers at the center, trying to get a human, leaving voice mails and emails, pleading for direction. One number even said something like, we are over burdened so expect us to get back to you in a few months. In. A. Few. Months. I was pissed. I waited and waited, 5 months, until I got an email, saying they were returning my email so hey call this number (the same few month wait number). I hesitated, for obvious reason.

Meanwhile, my mother found out about a program at the school down the street. I went the very next day, and the next and the next, until I found someone who could help. My son attended a speech class there, and then was told he was too young, and would need to go to the regional center. I refused to take that for an answer, so I did my research and found out he did qualify at the school. So I waited two months for an IEP. Or whatever they call it at his age.

By then, he qualified for the school service and attended two classes until heeeeey it is almost summer and so um..class is cancelled till late September. Again, I was quite mad. I found out they offer in home services and demanded them.

The services didnt target anything specific. It was just a very nice lady who did developmental games like puzzles. I dont think it helped him one bit, but I didnt want to lose whatever services I could get. Summer vacation breaks meant my son was maybe seen 6 times. But luckily the services continued into the school year (occasionally) since he did not qualify for classes or targeted assistance because the school kept changing things.

I looked into private therapy, but it was an hour away and took 3 months to get the consultation authorized. I had a special needs toddler and a newborn, so I was not thrilled about an hour drive. I, meanwhile, looked into seeing a new ENT (maybe one who did more than flash a light in my son's ear and suggest a third operation after two that did no good), and a chiropractor to fill the "what the hell, cant hurt him" quota.

I found, after a few weeks, I had to go out of network for the ENT, and gladly searched for THE most perfect ENT and found him. I called my son's doctor, processed some forms, same with insurance, and the doctor, called back insurance and.....oh...we don't accept that ENT. Here is a list of who to try. So I pick choice number two and....yep you guessed ot, same rigamarole, same result. After they said both doctors qualified. Then insurance tells me they won't authorize any ENT except his current one, at which point mama bear came out. Growl. I got a supervisor who agreed to help and....guess what? She said oh I dont see a single ENT. In your entire state. (Of over 30 million people.
) I flip the f*ck out and magically she finds one doctor. I call and make the soonest appointment...5 months ahead.

Then that ENT says they cant take my insurance, except they tell me this the day of the appointment. I beg and plead and they say they will try and work it out.

Meanwhile, my son sees a chiropractor who does thirty seconds of massage twice a month and I think, this is hogwash, but I will do it anyways. Anything for my son. A few weeks in, I get a call that my insurance is denying services. I start to cry and.....a miracle happens. The receptionist whispers, ok....the chiropractor wants to help your son. Pay us in cash, your co pay you once had, shh..... so...I do. And by God, it seems his infections disappeared. Total miracle, and enough good news to keep me going, pursuing his other issues.

So I go to see the ENT right after his infections had cleared (murphy's law) and another little miracle. Or really, what should be standard practices. He checks my sons ears. And then, his nose! And throat!  And performs a basic speech and hearing test. He asks about teething, milestones, sleep patterns. Wow! An ENT that, well, does E, N, and T stuff! He notices my son has enlarged but not infected tonsils. I thank the doctor for such thorough work and sadlly bid adieu, since I am unable to afford his help again. I report to my son's regular ENT about the tonsils and am told, oh, we never did look in his throat because you had reported ear problems. I spurt out, ENT means more than just E! And she says, make an appt with the pediatrician to get a referral to me to have me look at the tonsils and notate this in his record. I hang up. And give up.

Meanwhile,we see an audiologist. Four times. The first says he has a 30db hearing loss and sends us for more testing. The second time, my son wont sit still or wear headphones so we dont get a result. Ditto for the third attempt. The fourth ends in....confusion, as he didnt respond to certain hertz or waves or something and showed some issues but yet its not of concern and his hearing is fine....you know...cause fine means not hearing stuff.

I get him an IEP for when he turns 3, in home services end at this point. Then his paperwork is lost so he doesnt get speech class for three months. Then, with two months of school left with school holidays, furlough, speech teacher days off....he goes to class twice. And then it is summer break.

I get a referral to a nutritionist and it was kind of insulting. My son eats only a handful of foods and barely eats those (four bites of sausage for an entire meal, and two spoons of cereal for snack, is worthy of bragging to relatives about). She shows me a food pyramid and some Obama healthy eating website and that is all. Like I am a total incompetent human being who hasnt a clue about food.

The school year has begun and we have had one speech class, luckily it actually seems kind of targeted!  I asked about screening for ASD and SPD which the district legally must offer through an OT. Except our district has denied legal services to 50 students; most in the preschool program. I call my favorite regional center and actually get a human who says, if he is over three, we only serve those with ASD or other severe, diagnoses disability (ie Downs Syndrome). Since I cant even get a diagnosis, he cant get services there.

So I call his doctor but our network doesnt have any  OTs or really any pediatric specialist of any sort. So I research and find a place two hours away and call them. I leave a voice mail, they return my call 2 weeks later but I miss it. I return their call (yay voice mail), twice, and it has been a week. I am still waiting.

 Meanwhile, I find out there are OTs closer to home but I get to do the same referral process I did with the ENT plus an initial rec letter from his speech therapist. Two weeks later, she pens the letter. Four days later, the pediatrician still has yet to recieve the fax because the number which two of their receptionists provided me to fax to, apparently doesnt exist. And our home fax machine is broken and no where in town has a fax. I have to haul my two kids down in 110 degree weather to hand deliver the letter, an hour away, or wait two weeks for the therapist to re-fax it because she is on vacation. Then, the pediatrician must authorize an out of network referral and they get to choose the OT. This can take months. They may not even authorize it. If they do, it may only be a consultation, not even an evaluation. The OT might have stupid hours and rules, like the therapist I tried to get who only worked M-Th, 8-1, no kids allowed. (My town lacks any infant care, and my husband cant take off work to watch the kiddos until 3pm or a Friday).

Yesterday, I thought about writing this but was depressed because my son is almost four and his speech is "maybe at 24 months" and he needs "major intervention". No sh*t. At least someone has recognized this, but I feel he would be more advanced or skilled had someone other thsn myself given a crap two years ago. It saddened me to hear his speech therapist breathe a sigh of relief that we wont start kindergarten for two years, because he is that "behind". It made me question what growth I have seen in him. It made me doubt myself.

So the whole early intervention spiel? It is crap.2 If you see a frazzled mom with a special needs kid and you think, man that kid needs therapy, special ed, etc, perhaps this mom is like me. Perhaps she wanted to help her child, asap, to the best of her ability. And perhaps she has been trying to get the help her child deserves, for two years and counting. So smile, offer to help in any way, praise her for her efforts, offer a shoulder to cry on (or lots of wine!) When the red tape and hoops become unbearable.  

Monday, September 15, 2014

small town living

I went to a homeopathic business, and the owner was not there but her co worker wanted to know how I had heard of their business. I explained her daughter and I are friends from high school, and also my son's chiropractor had recommended her business, and oh she also goes to my church and lives in my neighborhood. This reminded me of last week at church, when the AV team was out of sync because they had a fill-in helping out, none other than my son's chiropractor.
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Then I open my email and read the newsletter for the women's group I belong to. My mom's former co-worker, who built a home for my husband and I, who is also a school board member, is running for election again and speaking at the group luncheon, as is a friend of mine from high school who got the idea because he knew I had thought of running but didn't wish to run against my home builder. Was that one long, crappy, run-on sentence, or a foggy stream of conscious? Anyway....
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Then I run to the post office right before closing and someone is taking forever to mail a package and hey.....I know her! She is the mom of a good friend of mine's from high school. We go to their home for New Years. Her son, my friend, was also friends with my husband in college and at his first post college job. My husband and I had the same mutual good friend and yet it took us five years to meet each other. As my friend's mom leaves (and we briefly chat), the post master locks the door. I think, hmm, it is a few minutes until five, lady. Then she runs over and pounds on the window. Penny the hobo (who I have written about before, she offered to babysit) was outside trying to get naked. The postmaster decided locking in the fully dressed patrons while Penny hobbled away (she only has one leg) was best for all.
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Man...small town life is unique!

Tuesday, August 26, 2014

time to cheer and jeer

I was glad summer vacation ended this week, because my preschooler cango back to getting speech services with the SLP (Speech-Language Pathologist). He had come so far since May! Sure he still was far from talking like every other three and a half year old, but he had a "language explosion", going from under 100 words to....a lot. Again, not what he should have, which is why he is still in speech, but a noticeable growth. Yippee!
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He has a new SLP, one who will actually give targeted instruction and homework (what a concept!) So I began our meeting all happy. And then.....
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Comments along the line of, "he speaks in garbled jargon" made me, well, feel defeated. I told the SLP that I understand most of his jargon. Sure, top-uh-hee-oo means "take me here" but hello, topuhheoo isn't jargon to me. Its words, dammit, he just can't pronounce for shit. So she says, "yes he really needs help pronouncing words. And he really needs focused language instruction and intervention". (No shit, I think, that's why we are here. But....but...yes he needs that but crap....you say it all seriously). Yep.she again focused on his need for INTENSIVE help. I felt elated and crushed all at once. Finally, after TWO YEARS of trying to get him help,someone realizes he,gasp, needshelp cause he isquite "behind"! Yay! And yet - boo hoo. I feel his recent growth is now an un-noticeable droo in the bucket, like...a needle in a huge haystack of "he's behind" hay. Like my recent praising of his growth was overdone and not....worth it.
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So then I bring up some other concerns his pediatrician, ENT,previous SLP, etc just brushed aside as "a stage" "what toddlers do". Again, I was left elated and defeated. The SLP listened and said,"whoa he really needs an OT (ocupational therapist). Finally someone realizes he needs MORE help!  But OMG he needs more help. It took over 6 months to let him see an ENT. It took 6 months (or...8?) To get him even evaluated for speech. Now he needs an OT? Must I wait till he is freaking in college before he sees an OT? I call his pediatrician (conveniently on vacation) and am told there aren't any OTs in the medical network so it will cost $45 to see one. And that the SLP must compose a letter stating his need (since he's new, this takes time so she can get to know my son). Then the pediatrician has to ok the letter and pass it on to the medical network. Then therty must ok it. Then insurance must ok it. Then the network chooses an OT for me. Being there was ONE entire ENT in all of freaking California, will I be referred to an OT in New Jersey?anyways, then the OT must ok it and tell the insurance. Then I can call and make an appointment, and due to a critical shortage of doctors and OTs, that can take 6 months.....if all the prereqs were met without trouble, otherwise I must start again from the very very beginning. Then! You know, when he gets his first visit in college.....it costs $45 a visit but they will probably be all, come twice a week!oh and sorry you can't bring your infant with you, just the 3 year old. Since my area is literally devoid of child care, I will find someone for $30 hour to care for my infant. But the OT is likely an hour or more drive away. So once I finally get help, its $45 plus gas ($15) plus babysitter ($90). $150 a visit. I WILL  anything to help my son but $150 each time is pretty damned crazy, right? Sigh.

Thursday, August 21, 2014

Migraines

"OMG I have a migraine" said the Facebook status, or "yeah I'm not in the mood to chat on the phone, I have a migraine", she said. And I felt stabby. Migraine my ass.

 Ok, no two are exactly alike (so maybe the examples above were "real" migraine sufferers), but they're similar enough. And in my case, every migraine I've had is bad enough that I wouldn't pick up the phone or type a Facebook status. So I feel a little twinge of rage when people complain of having a migraine, because it's like, if it's a migraine like I get, you do everything to not do anything.

Usually, they start with an "aura", but the type of aura can vary. Sometimes, it's taste. Suddenly, foods taste "off", like plastic, or too bland, or like soil. Other times, it's vision. I don't get squiggles in my vision or hallucinations or even tunnel vision, but it's like the lighting isn't right.

Recently, I went through - nope- am still going through a fun filled migraine swarm. One had the visual aura. I was in church and it was like the light was too dim and the words too small. I struggled to read the Bible. And then as we prayed and I closed my eyes, all I could think was, yikes it is so so so bright! Ouch! so bright and my eyes are closed! Another had a new aura for me, temperature issues. I was freezing (it was 70 in the house, warm to me normally) and I put on a sweater. I took a bath in water so hot it was probably dangerous, but I still had goosebumps while soaking in the near-boiling water. I went to bed under a winter blanket. And then the next morning, it was still 70 degrees and I had ice cream for breakfast I was so hot.

But I don't always get the aura.

Once, the migraine just hit BAM like that. I was teaching a class full of children and had to run out, split second, without warning. That's illegal, you know, leaving children unattended like that, but I didn't have time to call for a substitute. I merely dashed out doors, grimacing in pain, and vomited like mad. I often vomit because the pain gets that bad. That specific migraine was the worst one I ever ever had. It hurt so much I cried but it hurt to cry. The pain was off-the-charts bad.

It's like labor (as in, giving birth). In your head.

I should know. I gave birth twice, and once, without any drugs or intervention or anything. It was...ouch. I remember when I was in triage and the nurse said, "oh I guess you really are in labor, 7cm dilation!" and I had a big contraction, I almost vomited and thought wow, this feels like a migraine in my uterus!

Anyways....Other ones are less painful, but still painful enough. Not cluster or sinus headache painful, nope, more painful, although I've had those headaches too and they suck. But migraines are worse.

I don't always get the aura, so I don't get any warning system. Sometimes, they strike at night and so I sleep through the easier parts and wake up miserable.

Just last night, I had a dream where I went to the ER with a migraine and they gave me some medication and released me. And then it came back and the new doctor came to see me in the waiting room and asked the other waiting patients, "who has had a migraine before?" and a few raised their hands. "ok then, whose migraine went away?" and the same hands went up. "Ok then, ma'am, your migraine will go away so....go home." I was livid because she hadn't treated me. And then, in real life, I woke up.

The room was dark except for the slit of light by the window which was razor-sharp and bright. MY mind felt like it was thinking twenty different thoughts, and full of white noise, kind of like when you  have a dangerously high fever. As if there were twenty different people mulling in your ear while a lawnmower buzzed and something hummed. My husband opened the door and it was as loud as a gunshot. I exhaled and focused myself...."advil. water. migraine." I feebly mumbled. I wasn't able to get out of bed on my own to get anything. I had found a comfy spot where the light was only flood-light bright. I closed my eyes and it felt like I was twisting in a circle to the right as everything else in my field of vision twisted left, except, since my eyes were closed, there was no field of vision. It felt like when you are nearly blackout drunk (yeah.....bad college memories) and everything spins, you think uh oh,  right before.....you remember nothing more.

The first advil allowed me the ability to walk to the restroom, although it was as much as a struggle as it was (here comes my labor analogy again) when I tried to walk to the restroom not ten minutes after giving birth. I felt like I was some elderly invalid in a walker, except, I lacked the walker. Suddenly, I knew what was going to happen. I leaned down over the toilet and heaved. Nothing. I drank some water and, as expected, vomited. A few times. My body shook in shivers and I tried to whimper in pain and exhaustion. I took another advil (this one stayed down) and sipped a few sips of coffee (caffeine supposedly can help migraines) and went back to lay in my comfy spot, when I realized, wait...is it....residing? Is my migraine over?

Except...rarely is the migraine truly over. After the labor-in-my-head, vice grips tightening, sirens wailing, ratchet is click click clicking (each click more painful) pain of the migraine comes the postdrome.

The postdrome is better than the migraine, yes. It doesn't hurt to touch things. The blanket on my toes doesn't feel like it weighs a thousand pounds and is made of broken glass. A nightlight isn't like a spot  light and a whisper isn't a scream. Thank God. But, sudden movement makes me dizzy and brings back the ratchet click click pain momentarily, along with that dizzy-weakness you get if you stand up too fast and your blood pressure goes wonky. Sudden changes in sound or light (someone turns on a light, the radio, whatever) does the same thing, but I can at least tolerate dim lights and quiet sounds. Heck, I can even tolerate normal level sounds and light if I ease my way into it, like a dimmer switch. With postdrome, I feel as dizzy as the worst hangover, as dizzy as when you spin in circles too many times. I feel exhausted (except I'm a weirdo who cannot nap if I tried. I can only nap if severely ill, like pleurisy or severe dysentery) so I kinda just lay there, lacking energy.

Postdrome also gives me mind fog. Not just the occasional brain fart but like....a dangerous brain fog. This most recent migraine of mine, my husband took away my car keys. No joke. He felt I would be a danger to myself and others if I tried to drive, and know what?  He's right. I don't think I'd pass the police drunk driving test. I have difficulty forming sentences or making decisions. It's aggravating cause I know I have a brain, a pretty smart one, but it's taken hostage by the postdrome.

So again for those posting "omg i have a migraine" on social media, maybe you do but I want to call bullshit. Sure, I posted "ugh migraine" today on Facebook so am I a hypocrite? Hardly....I posted it after the migraine, while stuck in postdrome. Maybe these folks also post after the fact/in postdrome or maybe in the aura stage. But don't bitch about the severe pain. Because if you can actually open your eyes (ouch, bright!), move your body (ouch, touch hurts), get to the computer/phone (whoa, dizzy), and compose a typed or spoken sentence about your pain (while your head is in the last moments of labor) then wow, you're Superman.

Tuesday, August 12, 2014

no, I didn't eat those eggs you meticuously, lovingly made for me.

As my son has another screaming,, thrashing, banging things hour long tantrum....I feel...anxiety to say the least. A few days ago, I was filled with a similar anxiety but for the funkiest reason. Synasthesia. Some people cam smell colors or whqtever, which is what synasthesia "is", but aside from thinking "whoa, trippy", I wasn't 100% convinced it existed, but thought it would be neat to have. Wrong. I realized I have synasthesia but where emotions have a taste. No joke. So my husband lovingly prepared breakfast, scrambled organic eggs with slices of artisan salami and mozarella mixed in. How lovely and "umami" and gourmet right? What a nice husband! Well my lovely husand was disappointed when, an hour later, he came out to see my plate of eggs untouched. It so happens, synasthesia got in the way. I couodnt quite exlain it to him as he'd think I was nuts. But come to find out, anxiety tastes like eggs mixed with mozarella and salami. The second I took a bite, my whole being flooded with extreme anxiety. So, not "getting" it, I took another bite as my husband carried his plate to his office to eat and work. The anxiety increased. I paused, fed a bite to my kiddos, had a sip of coffee which washed away the taste. The eggs had a pleasant taste in a way, so I took a small experimental nibble and bam! The coffee had rinsed away my anxiety and the nibble of eggs brought it flooding back. I went to swish my mouth with mouthwash, scotch, chocolate milk, potato chips, all to try and overpower any hint of "anxiety eggs". And so I thought, hmm...this just has to be nuts. But I recall hating brocolli as a kid because it reminded me of being sick, so plain brocolli (as in, steamed and unadorned, how it was served to me as a kid, or, raw brocolli) still tastes like the feeling of being sick to me. So it must be synasthesia.

Wednesday, August 6, 2014

blabbing

Sometimes I blab and blog just to...blog, really. I feel compelled to blab on about nothing so here goes!
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My 1 year old baby can walk!!! And the weirdest of all? So my 3 year old learned to walk at 13 months. He was creeping along the furniture and I thought hmm...I should film this, and...I film him creep and creep and holy crap he just walked two steps! So fast forward to my 12 month old. I'm rocking out to Matisyahu, while my 3 year old begs for "Queen song" (Bohemian Rhapsody his favorite song) and my 1 year old is bopping his head and hutt...omg so cute! I grab the camera, press record and...dammit! He stops dancing! But I keep filimg, trying to goad him into dancing. The song winds down and I go to click stop and....what a coincidence, he walks three steps. His first steps ever. On camera. Holy moly.
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So I was explaining the handicap symbol to my older son, who with potty traning, is obsessed with potty triangle. Quick diversion- potty triangle refers to me teaching him shapes. Oh look, on the bathroom door is a woman's dress oh wow it is a triangle! So...since triangles are his favorite shape, and he is far too excited...err..obsessed...with his ability to control his bladder, its all about the potty triangle. Shopping at Target? Mommy must take him as we walk in. Then daddy. About to walk out? Repeat! Walking towards the bookstore? Double the potty triangle! Anyways...so some "potty triangles" feature the handicap symbol which he inquired about. I explained it shows that the place is friends an good helpers with those who can't walk, hear, or see very well. So....fast forward to last week's grocery trip. We finish everything and wheel the cart...past the handicapped parking spaces. So he reaches past the cart, towards the parking spot and says out loud "sorry you're broken".
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Sorry you're broken. Freakin' awesome kid. He's my little empath.
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So as blogged previously, I almost ran for school board. I mentioned to the journalist how I hooe to get out in the community. Its true...I wqnt to! But I'm a socialization/clubs/social crap failure. So I am trying....trying...church. I like my church so far, I really do (yay me!) And I even joined a women's Bible study group this week. Ok...if you're a different religion or none at all, please don't shut your ears. I couldnt care less what you believe. Well ok I care in that "cool for you" way but I won't ever pressure you to believe in my way of things. Anyways...I will attened whenever my uber busy husband can wqtch the kiddos. Most people there were old. Just like with joining a local womens club of all blue hairs, I kinda stixk out except there are three "young'uns" but blue hairs are the majority. One lady is 79 ad I swear she looks 60 if that. No joke. I want her youthful secrets! And another, Evelyn, warmed up to me and is just the sweetest. I also went to a local pregnancy advocacy center and hope to voluneer except, no kids allowed. I can't find anyone but some ciggarette smoking lady (nuh uh) to watch my baby. Unless I want to pay $39 an hour for baby care while I volunteer for free. Sorry, no. When I can only find teqchin jobs for $9-19 an hour and it requires 6 years of college and you, a high school grad, want $30 an hour....f*** off. Anyways...my point (do I have one?) Is that I hooe to find a way to volunteer. The place has been on my mind for a year. I can't get them oit of my head. I may sound all..weirdo..but I'm being led to volunteer there. I can't explain it. My husband supports it but is kinda like wtf...but yeah. I don't even know how I will find time to volunteer or what I will do to help, but I will find out somehow, rigth?