Mom to the Screaming Masses

Picky eaters

I'm interested to know how you all handle the different tastes of your children.

I posted a while back about my hatred of beets, and my promise that I wouldn't ever make my kids sit with a food until it was eaten.  And I haven't.

But, dayum!  It's hard to remember who likes what sometimes.

Nikolas doesn't like cucumbers.  Neither does Gabriel.  Everyone like raw carrots, no one like cooked.  Everyone except Emma likes watermelon.  Mackenzie loves mushrooms, but no one else does.  Allegra and Mackenzie like tomatoes.  No one likes peppers or onions.  Mackenzie loves spinach and shrimp.  Everyone else gags on them.  Emma doesn't like strawberries, or really any fruit except apples. Gabriel despises chicken.  Everyone loves yogurt except Riley.

See what I mean?

In our house, you have to try something when it is served.  Even if you have had it before and don't like it, I've told the kids that someitmes your tastes change, and you've got to try it.  If you absolutely despise it, the fall back food is a pb&j, or soy butter for Gabe and Emma, apple slices and baby carrots.  You have to make it yourself, though.

How about in your house?

The therapy, she's a workin'

Ok, I just posted a whole looooong thing about the therapy, and it vanished.  grrrrrrrrr.............................

I know it's too early to say that the therapy is working.  I know it, and I know that you all will be stellar at reminding me.  Lalalalala!  I can't hear you!  I choose to remain in my own little delusional world!

It's now 10:25 on Saturday morning.  Riley has been asleep since 9:30 Friday night.  She woke once at 12, I brought her in with me, and she went right back out.  Wednesday night, after the first therapy, she woke three times.  Better than 6-8.  Thursday, not at all.  NOT AT ALL!!!!!!

Thursday, she had three tantrums - and boy, were they doozies!  Friday, the same.  That's less than 5+, right?

We do the brushing program every two hours, followed by joint compression.  She swings three times a day, and does the sit and spin after that.  We work on climbing, and she has to work up to walking a mile a day.  Last night, we did 1/2 mile. 

We do small manipulatives, which is a pan of dried beans or macaroni, that little people are buried in.  That is at least once a day. We work on speech, and signing, and yesterday, for the first time in 6 months, she said a word that she lost.

She also takes a new vitamin, a DHA supplement, a calcium magnesium supplement, and protein in her morning milk.  These are not part of the therapy, but in reading I've done on brain defensive people, they've been shown to be helpful

We've also prayed. 

The Hubster thinks she's showing some improvement because she's getting undivided attention.  And because she's tired. 

Whatever.

I just know that the past three days have been a nice change.  One that I hope continues.

A Spending fool

That's what I've been for the past week.  Despite having no money. 

I have credit!  And some money, just not much.  Well, not anymore, anyway.

I bought a skirt and shirt with a Target gc, sent by my lovely friend Cookie.  I received special diaper orders, ones that were ordered (and most importantly PAID FOR) two long months ago and I had forgotten about.  That's the best kind of mail, right there!  A Mosaic moon soaker, 4 covers and 2 fitteds from Mudpies, and 4 sherpa Loveybums.  I ordered every Baby Einstein dvd that we don't have - I think it was six - because it's the only thing that I can count on Riley watching in the van.  I ordered four new books, so I have some new reading to take on my TRIP!TO!CHICAGO! 

Sorry for the yelling - I'm a bit excited.

I also bought two new cake pans for my famous chocolate cake.  I ordered a birthday present, too, but that doesn't count.  Even though it was a phenomenal price!  A trip to Old Navy yielded a few shirts and some capri pants.  (sshhhh, don't tell anyone that they are really pj pants.)

Yes, you may well want to know what has led me to such debauchery.  Such a spending frenzy.

It's either that, or lose my mind.  Whoever decided that a summer break was necessary for the success of the school year must have been smoking lemon jello. 

Today, we went to the Farmer's Market.  We bought sixteen ears of corn, a seedless watermelon, a locally grown canteloupe, local tomatoes, local peaches, three  half gallons of local chocolate milk, a pound of fresh bacon, and two delmonicos that are 1.5 pounds EACH.  A trip to the grocery added a pineapple, sweet potatoes, red grapes, and rolls for dinner.  We'll be eating good tonight!

I won't be spending like this any other time.  It was nice,though, to get some new stuff, since I've been especially down lately.

And so it begins

Today was the first appointment for therapy.  It went fairly well.  She LOVED the brushing program.  It's a small plastic brush that I rub over her in a specific pattern, every two hours while she is awake.  I also learned how to do joint compression on her - again, every two hours, following the brushing. 

We did some small manipulatives, actually the OT did it, not me.  Riley was more interested in playing with the beans, and she was obsessed when they fell on the floor, but overall it was ok.  She wasn't too interested in the scribbling.

The third part was the gym.  She really liked the bench swing, LOVED the sling swing, until it was closed over her.  That is something we are going to work on.  The climbing was really enjoyable for her, but after the fifth time, she started to tantrum.

The last part was block and towers.  She got upset there, I think because she was tired.  We talked a bit about her lack of speech, and the therapist encouraged me to work more on her signs.  Make her do them, if she doesn't, and don't do stuff for her if she doesn't sign or speak.

Every week, on Wednesday, at 1:00.  $100.  Self pay, due to the sucky insurance. 

I really hope this helps.

The Fan = Spawn of Satan

Or so says The Hubster.

Part of the difficulty in marrying a man almost as old as your dad is the fact that, well, he's almost as old as my dad.  There are days where I swear The Hubster is younger than I am.  There are days where I swear I married a man ready for the grave.

One of his "things", for lack of a better word, is his intense hatred of being cool.  Or cold.  Part of the reason that he moved from NY - he hates the winter with a passion that never will die.  He also despises the feeling of air rushing across his body.  Yup, he is weird.

Having had two kids in 15 months, my thermostat is a bit, well, funky. I am constantly hot.  Not hot in a good way.  More like sweat running down your bra, pooling in your belly button, stick your head in the freezer for respite type of heat.  I keep the thermostat set on 73, and I keep the ceiling fans on.  That's my compromise.  No fans, the thermostat drops to 70.  I despise being hot.  Unless, of course, we are doing the mattress dance.  Then sweat is mandatory, baybee.

He thinks that 73 is Antartica, and whenever he comes home, he turns it up to about 78.  The upshot of that was, I used to wake up convinced I was in hell.  Now, since we did the room addition, we separated the zones and I can keep cool upstairs while he is warm downstairs.  All is wonderful.

Except when he comes upstairs to sleep.  I have the ceiling fan on, and he immediately turns it off.  The sound of the fan turning off never fails to wake me, and I wake up fighting.  We argue for a minute or two, before he drops off.  I wait until he's snoring - not hard to do, since NO ONE ALIVE could sleep through that - and turn it back on.

I can't wait for fall, when it cools off.  Partly so that I can be cooler, and partly so he can relax about the damned fan.

A real eye opening experience

That's what this whole thing has been.

See, if someone asks me for my opinion, I give it.  I'm pretty straightforward like that.  You ask, I answer.  If you don't like my opinion, oh well.  I'm secure enough to know that my opinion is just that - MINE - and you don't have to agree with it.  I give other people enough credit to know that most of them care about their kids enough to do some research, and do what they feel will work.

I wasn't always this way, though.  My, but I was an obnoxious twit.  Thought I KNEW it ALL and anyone who didn't listen to me was just plain foolish.  Or stupid.  Or both.  I would tell anyone who seemed to be having difficulty exactly what I knew that they needed to do.  Was I an expert?  Good Lord, no.  I was just me.

Having a daughter with a problem, that's what's the eye opener.  See, I know what she needs.  I do.  She needs therapy.  But, it's amazing to me how many people think that they know better than me what she needs.  They persist in telling me over and over.  "What you've got planned, well, that's not what I'd do.  See, this here's what I'd do, in your shoes."  Only trouble is, that person isn't in my shoes.  Really, even a mother of a child with the same exact diagnosis isn't in the same shoes I am.  Maybe we are both wearing sandals, but hers have that funky strap between the toe thing that I hate, and mine are wedges. 

The point is, give me enough credit to know what I need to do.  And I haven't been asking for opinions lately.  Bitching?  Yup, guilty.  Moaning and groaning?  Right here.  Complaining and crying "poor pitiful me", as my mother would say?  Um, yeah. 

But, people of America, STOP telling me what to do.  STOP acting as if, by doing something OTHER than what you feel the situation warrants, I'm guilty of neglect.  If you tell me what you think I should do, and I don't do it, isn't that a pretty clear message that I am not interested??

Never ever again am I going to tell people what I think they should do.  Unless they ask. And maybe not even then. 

I promise to stop whining now.  Back to your regularly scheduled tales of life in the grocery lane with three carts.

Me and my kiddos

This is from Mother's day this year, I forgot to post it.  I think the kids look pretty good.  I look exhausted, but that's par for the course around these parts lately.

In which I show that I apparently have NO idea how to accept a compliment

I wrote a check at 7-11 yesterday, and the (older) Filipino male clerk asked for my ID.  Ok, fine.  I pulled out my wallet, and flashed him my driver's license.

"Ohhh, you look so nice!"

"Are you KIDDING me?  I look like a convict in this picture!"

Stupid, stupid.  The man is complimenting you, let it go already.

"No, no, you look great.  You must have more pictures that make you look even better, if you don't like this one."

"Thanks."

That's what I should have said in the beginning.  It is SO hard for me to accept a compliment. 

How about you?

My appeal letter

I turned in my appeal letter to the insurance company today.  It follows below.  In the packet, I put my letter, letters from three of her doctors, one of whom said that the Insurance company would be guilty of medically inappropriate care, as well as articles from other hospitals, detailing how SI should be treated.  Now all I can do is pray.  Join me, willya?

My daughter, Riley ----, was referred by her primary care physician, R-----, for a neuro developmental consultation. I had felt for quite some time that there was something not quite correct with Riley. She is my sixth child, and my husband’s ninth, and Riley has behaved differently than any other child we have encountered.

Riley has difficulty in several areas. She tantrums frequently, and aggressively. During those times, she bangs her head, and hits and kicks anyone holding her. She bites herself for comfort, forming a bloody spot on her thumb that has been slow to heal. Riley is rarely happy. She is extremely difficult to calm down. She spends the vast majority of the day screaming, crying or tantruming. It is very difficult to spend time with her, as nothing seems to make her happy. She is inconsolable most of the day. Going to different places, or events, as a family is very difficult. Riley is sensitive to changes in sound, crying or screaming at loud noises. She is uncomfortable around strangers, and if approached by said strangers, responds by crying and attempting to escape. She is not able to be comforted by other people, and it is difficult for me, as her mother, to leave her with any child care, as she spends the entire time crying. The constant crying and tantruming is becoming unbearable for our family.

Riley does not use any language. At her twelve month checkup, I reported that she had 5+ words, as well as two two word phrases. She does not use these words any more, using only “Mamamama” as her sole word. She also has lost her sign language. At one time, she could, and did, sign milk, more, please, thank you, book and all done. Now, the only sign she does is for more. She shrieks in order to get what she wants, and cries when we do not understand her wants.

Riley has a difficult time with eating. She has never, since the start of solid foods, allowed anyone to feed her. She will hit a spoon or fork away from her mouth. She must touch any foods that she eats, and then explore them for texture. She is very thorough in this, and then she will put the foods into her mouth. She repeats the same process in her mouth, and many foods are spit back out. She prefers crunchy and hard foods. She will only eat certain things; at this time, the list includes pasta, apple slices, green beans, peas, crackers and ham. Mealtime is a high stress time in our house hold.

Riley does not tolerate most clothing. We spend a significant part of each day dressing and redressing her. She is frequently barefoot, as she does not like shoes or socks. She will cry and pull on disposable diapers, because the feel of them is unpleasant to her.

Sleep is another issue for my daughter. She is a poor sleeper, waking frequently, and naps are infrequent and vary in time and length. I have done as many different types of activities to encourage sleep as I can find, and none of them have made any improvement in her sleep. She is constantly tired, and that contributes to her irritability.

She does not like having her face washed, her teeth brushed, nails clipped, hair brushed, or any of the things that fall under basic hygiene. These activities almost always produce crying and shrieking.

She is unable to self soothe, and the way that she will calm herself is by skin stroking. Mainly she will put her hands up my shirt and rub my stomach and arms.

Our family is frequently tense and on edge, as we are subjected to constant screaming and irritability. It is difficult to go anywhere, as I almost always have to leave due to Riley acting up.

After a visit with Dr. A---, in which I told her all that we were dealing with, we were referred to Dr. M, with Children’s Hospital, and his visit answered our frustrations. He reported that Riley has Sensory Integration Disorder. This is a real disorder. It has been described as a malfunction in the brain’s translation of sensation into meaning and action. A processing disorder, a “traffic jam in the brain”. When brain-body connections are intact, the lower brain constantly interprets input from sensory receptors all over the body and responds with motor reactions. This occurs without our being aware. People with SI do not have this luxury. They have faulty sensory processing, and they vacillate between states of over and under stimulation. Normal, everyday life is very confusing for these individuals. They may become discouraged, irritable, whiny and withdraw. They may throw tantrums.

Sensory Integration Disorder has been shown to be helped by occupational therapy. This is hands on, developmentally oriented therapy, based on the notion that our brains are influenced by our experiences. OT works on decreasing tactile sensitivity. According to the Occupational Therapist that evaluated Riley, she scored below the 2^nd percentile in the Sensory Profile, on three out of five of the factors. This is a child with a real, curable disorder.

Our request for therapy was denied, based upon the fact that Optima does not cover developmental delays. Sensory Integration is not a developmental delay. In reading the reports from Doctor M--- and S.H., OT, there is no mention of developmental delay. In fact, Riley scored at or above her age level for many of the required tasks. She has difficulty tolerating many normal daily activities, due to a sensory overload. Sensory Integration is not a new problem, but one that has been extensively documented in various medical journals. Riley’s SI issues are interfering with her development in normal behaviors. OT will help her to learn to function at a normal level, and improve the quality of her life, as well as that of our family. Due to these SI issues, our daily life is in turmoil. It has been suggested that she receive OT for one year. At one visit a week, we are requesting approval of 52 visits. It has been said that after one year of therapy, she will have the skills necessary to function at a normal level.

Riley’s diagnosis of SID has been documented by visits with Dr. M---,neurodevelopmental pediatrician and Dr. H----, Ph.D at (local medical school). Both doctors evolved at the same conclusion, independent of each other.

Please approve the year of occupational therapy that I am requesting for my daughter Riley. She clearly needs further help.

Carmen

Dear Local Cable provider:

You suck.

I called your phone number on Monday, to report that I was having periodic difficulty in connecting to the Internet.  My connection came and went at it's leisure.  Your phone agent told me that there was a report of a possible bad line, and surprise!  there was an opening on Wednesday for repair.  Someone must have died, for the opening to come through before September.  I jumped at the opportunity, and agreed to put my life on hold  be home between 8 and 12. 

Today came.  Whoot!  The repair person, Mr. Politeness personified (let's call him PP for short, shall we?) determined that the problem with the line was due to the fact that we have cable PLUS a satellite dish.  Despite the fact that we've had this arrangement for the almost three years we've been here, it's now supposedly a problem.  He said, "Say, you see this here?  THAT's your problem.  Your cable line is connected through your satellite.  Whaddja do that for, ma'am?"

Well, for starters, your company did it, when we added the new rooms. It has worked just fine, until this week.

"Oh, no, ma'am.  We'd never something so dumb.  Y'all must of done it."

Hmmmm.  Are you insinuating I'm not entirely truthful?

"Oh, no, ma'am.  Just sayin', is all."

PP disconnected and rerouted, and we had NO INTERNET.  We also had NO SATELLITE.  But, hey, it's not his problem, he's only responsible for the internet.  Riiiiggghhhhttt.

Next, on to the modem, where PP decided that a wire must be bad, but he didn't want to change it, since it was a tight connection and he was afraid he'd strip the wire.  I got in there and pulled it out myself, and he changed the wire.  Terrific.  Now the modem only works when it's laid on it's side, with all the wires lifted straight up to heaven, draped over the shelf and during the summer solstice.  He left the modem hanging, with the wires out, exposed for all to see.  During this time, he received an important personal call, one that he HAD to take, since it pertained to his hot water heater at home.  Ten minutes later, and he was back to my troubles.

PP then attempted to repair the satellite connection, but, again, he's not responsible for that.  It's still out.  A call to the satellite company indicates that the problem in - you guessed it! - in my house, and the service call will set me back $99.  The worst of it is, we've had no Lizzie McGuire, That's so
Raven, No Blue's Clues, or LazyTown.  And won't, until Friday or so.

A quick trip outside showed him that, indeed, there IS a faulty underground cable.  He replaced it with an above ground cable, which runs through my neighbor's garden, across their lawn, through mine, and across my sidewalk into my house.  He made me an appointment to have it buried.  Next available?  Two weeks.

He assured me that it was just coincidence, ma'am, that now my satellite isn't working, my internet is still difficult, and a wire is exposed in my yard. 

Do I look stupid to you?  Don't answer this.

I've called the tech support number, was on hold for 30 minutes for his supervisor, who couldn't be bothered to come to the phone.  HIS supervisor will be in tomorrow, and he better have his steel undies on for my phone call.

Oh, and my insurance company, the one who denied my claims for OT?  We are in appeals hell, where they ALSO don't believe in returning phone calls.  They claim that they can't TELL me where their offices are located, so I can drop off my child   my appeals paperwork.  Just trust the mail carriers.  Riiiiigggghhhhtttt.

I'd look for the Candid Camera around the corner (thanks Chris for the reminder of that program!)  but I'm afraid of what is to follow.........