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

Friday, November 7, 2014

the living puzzle

My child is a living puzzle. His speech and language pathologist (slp) says he is like swiss cheese, with lots of holes. This week made it very apparent.

He can barely compose a sentence, comprehend someone, or survive an hour without a meltdown tantrum. And yet, he can write most of his name and draw people, a skill a year ahead of his age. He even labeled his drawing, with specific letters of people in the family. Wow kid, you blow me away.

But then.....he had a speech and language asssessment that nearly left me in tears. He could not follow the simple directions. He could not answer "what is your name". Sure, when asked, "say one" he counted to twenty (another super skill set of his) but then when she said, "say dog" he mimicked, "say dog". She pointed at another picture, "boy" and he stared blankly. She had never had a child his age who needed her to say "say", every single time. He lacks most verbs. He cannot finish a sentence (such as, the teacher shows a boy putting the ball under the table and says, "the boy" , he is to say "puts ball under a table" or something like that. He just stared. She repeated "the boy" and he would mimic her, or point to something unrelated, "like this one.") Sure, he can make the correct sounds; in fact, he is a bit ahead with his flawless Js, Shs and Chs sounds. But he cannot quite.....have a simple conversation. Sure his speech has grown leaps and bounds (he never would mimic before, and just yesterday he learned grocery, take, lettuce) but yet he seems leaps and bounds behind.
My snuń£gle-buddy children

Add in this....je ne sais quois of his and man. He is a puzzle. He tells anyone who is crying, "it's ok" and brings them toys, and yet he pinches and hits everyone.  He is not fully potty trained, but can remember certain things as if he has a photographic memory. He has epic meltdowns and yet he seems to be the popular kid.

Sometimes, I look at my one year old and think, oh no....someday soon, you will surpass your big brother...how will I deal with that?

This new SLP only treats kids with speech/language issues, nothing else. She even sees that there is a je ne sais quois with him and that that will likely mean he cannot get speech therapy (drats) but she is willing to bend the rules and give him a try.

Meanwhile, my school district is in violation, over 50 students are awaiting special ed assessments (I am number 51!). It has been 2 years since I noticed my son was a bit different and all I have gotten is a speech assessment, NOTHING ELSE. And not for lack of trying. But I am determined to get him the help he legally needs.

I fear him growing up, being one of the "slow kids", feeling bad about himself. This fear makes me like a deer in headlights. But I know no matter what, I will figjt to the death to get him help (even if it seems like he might be in high school before he gets any help) and that no matter what, he is my special little puzzle guy. Somehow it will all work out, even if it seems I am stumbling backwards, cursing everyone to get their shit together and give a damn. This mama bear is about to roar and protect her baby cub!

A labeled drawing of the family

Friday, October 10, 2014

no interest in pinterest

I kept hearing about Pinterest and decided to finally pay it a visit. I revelled in horror upon seeing it and vowed to never be a Pinterest mom. I just couldn't spend two hours and twenty bucks to make a sensory table that my kids would destroy in one minute flat, leaving me with sand and rice grains in strange places for the next decade. I just could not make sense of color coordinated popsicle stick snowmen bathroom candle votives or whatever. C'mon people, is this "home maker" thing a competition? Screw that! So what if I only sent a dozen pre-made 99 Cent Store cards to pre-school when all others sent handmade sparkly finger puppet cards with attached lollipop cupid's arrows or whatever. I didn't need to create and micromanage every childhood experience according to some website. I did not need to post my crafts on tumblr and instagram for the entire world to see how awesome of a homemaker I was.

And then....as my boys discussed penises and farts while my mom told me she was a non-traditional mother, after my grandma could not even comprehend why I had a (somewhat) clean house and planned dinner in the making....I logged onto Pinterest and made a quick pumpkin craft.

I can never get my spit together to be a mom who makes 3 exotic, never from a box, meals a day, who has a daily schedule with craft time and learning time, a seasonally hand crafted and decorated home mirroring Good Housekeeping meets Architectural Digest. Aint gonna happen.

But my kids deserve something. I won't have to send my kids to other's homes to experience a real Thanksgiving or Easter. They will see fireworks every July, and help put cheesy themed clingies on the window and help make a Holiday centerpiece. We will attend church and social functions, hang Christmas lights,  have 3 meals a day (boxed mac and cheese counts, right?). We will do a craft or Pinterest activity a week, and my home will attempt to look more clean than, say, a Hoarders episode. I won't let addiction take me over, and will do my damndest to not let depression make me into an empty shell of a mother.

 I will flounder and fail and rise again. I will never be like my best friend, a mother I dream to be. I will never quite grasp mother/home maker one-upping, and Pinterest still makes me feel like pile of crap because I don't make bunny-shaped organic cauliflower buns or whatever and...sigh...we do sometimes eat crappy fast food and leave the television on too long, the antithesis of Pinterest. I am a product of generations of neglect, and have to dig down deep and learn everything new, but it will show. And my no-sew pumpkins and soon-to-be-cooked bratwurst and kraut dinner will be proof that I am trying. I am trying to battle the Pinterest vs neglect demons and come out on top.

Friday, October 3, 2014

this is why i don't do disaster recovery

My paternal grandma, Nanny, is a sweet 94 year old British lady who still serves tea at four o'clock. Except not today. We went to visit her today and she sat in her chair, frail and papery, her eyes milky and dull. She stuttered out a scratchy mumble of words that sounded like a raven's caw and sandpaper. She clawed for a tissue and clutched her stomach with as much poise as could be mustered. "I am a bit nauseous, I don't feel well" she rattled. My uncle grabbed her a pan (in case she needed to vomit) and she clutched it and shook her head, sighing. She had not eaten all day and refused to let more than water grace her lips, a small and mostly full glass sat next to her as it had all morning.

My mom started to tear up, offering a warm beer to my Uncle (a former alcoholic). He declined and she silently served up some rice to my son. Nanny refused the rice, her hand shook and she had to make an effort to say, "I love you but no food" to my mother.

My mom pulled me aside, not a religious one (unlike my staunch Catholic nanny) and mumbled something about me telling her the angels were here for her. I blew it off as too morbid, but as my uncle was finally able to convince her to go take a nap, and she could not even get to standing, I knew it could be the last time I would see her. A certain urgency and silence hung in the air. Shit, I have never seen anyone close to death before. Especially not this close. mother.

My grandpa decided right then to call the doctor, but at 96 he is a bit senile and quite deaf. He was getting nowhere. I wanted to help, but had two small children to chase after in a home full of glass figurines, family too distraught to watch them. My cousin's wife stepped in, and I guided her through things since my Nanny and I go to the same hospital. As usual, they did not have any appointments for the next month and wanted to funnel a dying woman through the hours-long urgent care process. I helped demand a PA or RN, and they magically found an appointment tomorrow morning, praise God. If there is a tomorrow morning. I helped provide medication informations and birthdates and breathed a sigh of relief. mother.

Nanny was finally convinced she needed rest, after grabbing frantically at her shirt and trying desperately to say something but uttering only a breathy rattle. mother.

Shit. She was going to bed. I had to say my gooodbyes, but you know, without saying goodbye, here come the angels, and all that. I grabbed her hand, feather light and neither hot or cold...unreal, really, and held it. "Remember I got you a cross from the Vatican?" And she weakly fidgeted where a necklace would be. Crap. How is this a help? "Well, we go to church now. The boys, too. They know Jesus." Crap. Where am I going with this? How is this helping? How is this closure? "I am praying for your health. Angels." I pause. Shit. My mom kept mentioning them in my ear and here I had had verbal angel diarrhea. I sent a quick prayer to God, silently in my head. Then I worried because I thought a curse word and thought angels were a dumb thing to say. Was that blasphemy? I trudged on. "Jesus's warmth is hugging you. Umm..because...I pray for you to feel better. The angels...umm...my kids have them. We all have angels. And Jesus." I am sweating. My nanny smiles and I wonder if she can even hear or understand what I am saying, especially cause my verbal diarrhea is confusing even me, and I am feeling guilty about associating angels with diarrhea. Then I think about how angel diarrrhea would be like diamonds or something and shit! Last words to your nanny! C'mon! Wait is she smiling because I am making a complete idiot of myself? mother.

I dug a whole and have to gracefully pull myself out. "Right, Josh?" I say, pulling at my toddler. "You like baby Jesus right? Baby Jesus?" And my uncle interrupts me and gently takes her hand. "Let us take you to bed" he says, and I stand and move to the side, secretly letting a tear slide down my cheek. mother.

This is why I don't do disaster recovery. I suck under pressure and death is far too foreign to me. mother.

postscript, as of early Friday morning upon finishing this post, she has been admitted to the emergency room, no further details. I hope that whenever she passes, be it today or years from now, that she goes without pain, only peace and a smile on her face. I wish I had got to know her better, we really only developed a bond in the past few years, as some senility set in, so I never really got to know her. But at least I knew her and know her and love her.

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.
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....
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.
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!
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.....
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.
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.