Wednesday, July 22, 2009

What a Jerk

I am so sick and tired of all the looks and comments about my son's shrieking.  JT can't talk and so his preferred method of showing any strong emotion is shrieking, whether it be sad, frustrated, angry, playful, happy, overwhelmed, hurt, excited or just when he wants to say, "Hey!  Look what I can do!"  So, as you can imagine, out in public we get a LOT of glares that clearly say, "Can't you control your son?"  

So yesterday I was in the store with my little sister, when my son got angry at something and let out a really shrill one.  This middle aged woman was standing about 8 feet away.  She not only gave me MAJOR stink eye but as she was walking away she actually said, "Come on lady.  Control your kid."  I was about to turn around and ignore her like I ignore everyone who says things like this to me but I saw my sister's face.  Slack jawed, pale and wide eyed it looked like she had been slapped.  She was right.  So I turned back around and said, "Excuse me?"  

"Your son just screamed right in my ear!"

"I am sorry my son is DISABLED and CAN'T SPEAK!  You JERK!"

Yes, I pulled out the disabled card.  But I wanted to run her down and tell her just how much I despised people like her that get so hateful that they have to deal with my son's shrieking for 5 seconds of their lives.  They think THEY don't want to hear it?  I hear it all day everyday for everything!  Some people have said things to me when he shrieked for joy.  I am not going to discipline my son for showing happiness.  And no, I am not going to discipline him for showing UNhappiness either.  He has the right to say how he feels even though we may not always like hearing it.  It isn't like he carries on doing it for minutes at a time it is just one long blast.

I hope I was never thought someone was a "bad mom" just because of something like this.  Why don't people just realize they don't always know the whole story and they just need to give a mom a break.

Tuesday, July 21, 2009

You're gonna want to read this!

Hello Everyone,

I got an e-mail today from a Mom who'd like to join our ranks. I accidentally deleted her e-mail, so I'll paraphrase this as best I can; She's been reading our blog a little bit and has really loved it. It's given her a lot of comfort and strength to know that someone somewhere understands. She has a unique and interesting story that I think you'll all want to hear- it could happen to any one of us! and what a nightmare! A version of it is posted here below. She is still trying get some sort of action taken and would love our support in her efforts. If you have comments for her you can leave them on this post. As I said, she is reading our blog, and I believe she's planning to join us soon.

Parents In Utah School Outraged Over Kids' Safety In School

Two parents found out weeks after the incident that their children were being abused emotionally and potentially physically by another student in their special needs class. The parents, told only of the incident by a classroom aide are furious that the teachers and school officials failed to tell them what actually had happened to their children while in the care of teachers. The events occurred at Plain City Elementary in Utah.

Bully_bathroom.jpgThe mothers, Debbie Veldhuizen and Jamie Doak, have filed a complaint with the Office for Civil Rights and have sent notice to the Utah Professional Practices Advisory Commission and the Weber district. Nothing has been done. A lawsuit was dismissed for not being properly filed and they have since stopped pursuing it. They have moved their children out of the school.

But, What Happened?

According to a teacher's aide named Holly Wilson, a third child, not identified, touched Veldhuizen's clothed groin during school, causing him to have an accident. In addition, the same child harassed her son in the bathroom, screaming profanities at the child and threatening to kill him. The eight-year-old boy was so frightened; he was afraid to use the restroom and began having accidents. The other boy, Tucker Doak, does not speak and is about the size of a toddler. The same student choked Tucker and later tried to suffocate him.

The mothers believe that the school officials should have done more for their sons, specifically alerting them of what was happening. However, the school authorities said they did not alert outside authorities because they have to be careful doing so when children act out against other children. They work as a team to handle the situation and ensure it does not happen again. The mothers do not blame the offending child because he too is a special needs child. They do blame the school for the lack of notification and the lack of providing the proper environment.

Throughout the school year, there were four aides. Moreover, for six months of the year, there was no licensed teacher in the classroom due to budget shortfalls.

Posted by Richard Oppenheim

The Latest

So I haven't posted in a LONG time. We've had some really good days, some bad but really, he's doing quite well lately. We are now in the exhaustion cycle. Marshall isn't sleeping well again. Every night for the past 2 weeks, he has been waking up screaming. We have to go into his room and tell him he's OK. Then he goes back to sleep until the next time. He also talks in his sleep a lot. We go in his room at least 4 times a night. It is exhausting!! Still, overall I can't complain. He is eating and less angry too! That is so nice. We still need to improve eating some textures but when it's something he likes, he gobbles it down. We still can't get him to eat noodles. I made Chicken Noodle Soup with my own homemade noodles. We made him try a bite but he threw up. Oh well. It's still progress.

Four weeks ago, he was SO mad that I called my husband to say I was dropping Marshall off at the nearest crisis center because he was so out of control and I felt myself getting there too. Brian just told me to rake Marshall to him. He was at school working on his research so he made Marshall go there and be bored. Then, just before I was supposed to pick them up at the bus stop, I smashed 3 fingers on my right hand in the garage door between 2 of the sections. I broke my ring finger all the way through at the tip but only bruised the other two. I'm still wearing a splint and sometimes it still hurts REALLY bad but I think it is starting to get better.

Well, that's my update. I hope all of you are doing well.

Friday, July 17, 2009


This is mostly off topic, but I am moving to Utah soon. Maybe in a few weeks or possibly next month. (ha! which is in a few weeks!)

Anyway, I am starting to think about things such as how the heck I'm going to transfer medicaid insurance/waiver, developmental therapy services, etc. Who's a good doc to see for special needs kiddos? Anyone I should be avoiding?

Can any of you mamas help me out?

This llama is waiting with pen in hand for some guidance!

Monday, July 13, 2009

Sometimes I hate it

Recently I had a HUGE influx of readers on my blog. The comments were not ... um nice. But after a day like today I can't help but think how much this sucks.

I love Tyler. I do. I try everything in my power to be the best mom in the entire world and I fail at it. I hate it. I hate that we have to do this. I hate that he has to go through so much. I hate that people think we don't treat Ty "normal." I hate that we have to do things that most people have NEVER even heard of. That getting routine immunizations is not the same as botox every few months. That your busy week doesn't get to consist of painting your house but dragging your kid to every therapy that anyone can think of PLUS some.

I don't get it. I don't get why its not OK that this can suck. Why do I have to be OK with it all the time? Can't I say it sucks.

Today we did casting for new AFO's. SMO's are coming with them and we are doing Titanium afo's but they are not covered by insurance OR Shriners. We have to pay half of them. But the casting part sucks. For real, this kid has been through 7 brain surgeries, countless pokes and prods and he really doesn't want to put on a freaking cast.

My hubby who works ALL the time was suppose to go with us to help hold him down. Yeah. That didn't work out. So here is my 30 pound kiddo, thrashing around, spitting, screaming, gagging kiddo while they put casts on him. Finally they had to get another person to help me hold him down. Yeah. A normal mom so gets to do that.

Seriously... I hate it.

Sunday, July 12, 2009

Happy Ellie, not happy bowels.

Yippy! The short gut Cha cha! Ellie had another large bout of diarrhea this afternoon so we are back to just clears. We decided to try pedialyte through her G-tube at a very slow rate for tonight and then if her bowels tolerate that, then we will increase tomorrow morning.

I guess we were a bit to premature with the solid food. Usually noodles and plain chicken are pretty safe with her, but not this time.

Ellie still wants to eat but her bowels don't like the food. It is almost as though her colon is doing nothing, there is so much water in her stools. I don't know what this means for a possible discharge tomorrow. I personally would like to see more improvement or at least know what it is that we are dealing with before we go. But... that is just me.

We will find out more tomorrow when rounds and the GI team come through.

Friday, July 10, 2009

Clay Crisis Chapter 2

How do eight weeks pass, summertime be well into July heat, and we can hardly remember our way home? Sometime today, God willing, we will leave the hospital and not have to be readmitted for a long time! Clay's gastrostomy mickey is now replaced with a Gastrostomy/Jejeunostomy tube.....a lot more obvious and larger than the simple mickey, but if jejeunostomy feeds keep us home, by golly we will happily accommodate larger tubing and learning a new method of feeding him after 24 years!!! His stomach no longer empties as it should because of bands of tissue and anatomy constricting the area that opens into the intestine and also keeps food from back flowing to the stomach......(it's all complicated and at 50, my brain is much foggier than when I was 26, so I'll just say complicated; it all makes sense, just no need to go into grand detail for now) the J tube will allow feeds to be absorbed by avoiding the stomach. We will use the G tube port for medication dispersal and water flushes, but for the enteral Nutren 2.0, we now will use a feeding pump and slow feed the majority of the day through the J tube. Overwhelming? YES! Adjusting ~ adapting? YES! Clay has had a gastrostomy since he was a year old....bolus feeds; now to convert back to a jejeunostomy and a feeding pump is a work in progress, but feasible. If this measure keeps him healthy and at home, we definitely will learn and adjust accordingly. It has been a very long eight weeks with only 14 nights cumulative with him at home between readmits. Prayerfully the docs from Internal Medicine have finally pinpointed why we kept needing to return with feeding issues. Thank God, they feel this has been the reason.....all he has been through has been difficult and exhausting. But Clay is still with us and we hope this new feeding regimen will be finishing glaze on his now reformed vessel. There is much more I can explain and possibly post, but for now a smaller post to update our status. Please keep Clay in your prayers. We appreciate all of them as we anticipate going home at some point today and very prayerfully, our lives will begin to get back to normal with some modifications and rest. We are blessed to still have Clay here with many amazing miracles and extreme blessings during this eight week ordeal. I cannot fathom how Mary endured Jesus suffering; I experienced much conflict with emotions in my prayers and groans that words could not express as we watched Clay suffering horribly and painfully as he has. His journey here is not finished yet; he says his angels have been with him and he is to stay here with us. I don't know for how long, but I will treasure my jar of Clay for as long as God ordains our purposes here on Earth. He is sovereign and He deserves much praise for all He has provided. Love remains never ending.

Much love, many hugs, and abundant blessings to all you mamas and amazing kids~ Annette :)

Tuesday, July 7, 2009

No Title

I highly recommend that you avert the eyes from this post. I have been sporting a bad attitude that has lightened the rose-colored tint to my glasses. And now all I see are the stark contrast between what (I think) things should be and what is reality.

Ok, so you are still reading. You'd better grab a handful of happy pills because right now, all I have it bleak ranting about how life is just plain unfair.

Let me start out by just saying that I work as an SLP with my local early intervention agency... and last fall, I went to a meeting where we were told that my state was implementing a new and innovative, top-of-the-line, best practices method for intervention. Enter "The Coaching Model". Last December, the first pilot program ran for the new Coaching Model and it has now been implemented. Let me just briefly digress and explain WHY this is not a good thing.
Imagine all of your therapists that your child works with. If your experience is like mine, you have your physical therapist, your beloved occupational therapist, and if you're fortunate, you cherish your speech therapist (I LOVED mine!). Then add to the mix your developmental therapist... and don't forget your service coordinator. Ok, so you have this team of therapists who help your child to reach developmental milestones. Now. The coaching model has a team of all the professionals... but instead of having 3, 4, or even 5 therapy appointments per week, one with each therapist, the coaching model involves just one (1) primary coach who has contact with the family. Your primary coach now provides ALL the therapies... so, if your Coach is an SLP, and your kiddo needs some OT or PT, then SLP will be doing therapy activities.

Now,this might be a good model for kids who are typically developing, but just have slight delays here and there. But as parent of a child with a known syndrome and multiple needs, I really feel like my child will benefit from highly trained professionals. I would not like to have my SLP do PT, or my PT doing feeding therapy. It would have been a disaster for my child... now back to my original train of thought.
At the begining of the year, my governor announced state cutbacks of approximately 6-9 percent of all budgets across the board. As a result, kids in my state who were originally receiving multiple therapies plus an additional 30 hours of developmental therapy (typical in Idaho) were reduced to a max weekly amount of 22 hours of therapy. So for many kids, their services were cut in half- after PT, OT, and SLP, there's only about 15 hours of developmental therapy time left. THis is a big deal.

Last month, the early intervention program announced that all families across the board, whether they carry insurance/medicaid or not, will have a copay. A stinking copay to cover services that our federal laws have mandated our children to receive if we so desire those services.

And this week, a letter was sent out to all families with kids with disabilties that Medicaid coverage is changing as well and families will now be paying a premium for those services as well.

In doing a little homework, I have found that many of our western states have moved in the same direction. And honestly, my head is feeling heavy and I feel emotionally drained at the notion of the winds of change that are about to befall us. As parents of children with special needs, I really feel like we are about to be dealt a hand of cards that are stacked against us in a very big way.

For me, my daughter does not currently receive SLP, OT, or PT. She is eligible for services (won't go into why she's not gettin anything right now). She is getting IBI therapy over the summer for 20 hours a week...

We haven't found out what our premium is for her Katie Beckett coverage, so this could be a big deal for us. This is her only coverage right now, since Blue Cross private insurance (where I purchase the policy) will not insure her.

So my question to you is, have you heard any changes in your area and how is it impacting you?
I just got an update from Annette. Her father is still in the hospital struggling, and Clay has had several complications with his recent illness and surgery. It does however look as if things may be starting to look up. If you have a minute, send a prayer her way, or an e-mail. I can't imagine how difficult it would be to go through all that! We love you Annette & Clay!

Thursday, July 2, 2009


We went to our MRI appointment on Monday.  We had one or two done before he was two and then we had another one in...I think it was November.  The results were always the same.  He has a lot of brain damage and scar tissue.  They have been especially worried about the 3 and 4 ventricles because the scar tissue seems to be blocking them partially.  Last time they said they didn't want to send us to a surgeon because a surgeons answer to anything is surgery.  Makes sense.  So we waited to see what would happen.  

By the time I made it back home from the hospital, the radiologist had called my son's doctor who called us and the emergency contact and us again.  He started out so benignly.  "It's not good but it's not bad."  Okay.  It looks pretty much the same as the last one.  But it isn't better.  So waiting and seeing didn't do us any good.  It might be a little worse.  Hard to tell.  But the point would be that the pressure didn't go down.  Had I seen any seizures?  Had I noticed him getting worse with anything?  Was I sure?  I don't know.  He had seemed mostly normal I thought.  As normal as he is.  Here is the number for the Neurosurgeon.  

Brain surgery.  Next week we go in and find out just exactly what will happen.  I figure wait and see is probably out of the question.  We already did that and I guess it didn't work.  Besides, how long do you wait if it could mean additional brain damage?  We really can't afford to do that.  So what's next?  I have no idea.  Next week can't come soon enough. 

In the mean time I am slightly out of my mind.  I cried for 3 hours straight the first day and on and off for the past 3 1/2 days.  I can't remember anything, I can't do math, I can't sleep until I am out of my mind tired.  This could be the craziest I have been since he got meningitis.  Blah!  Not knowing what will happen is killer.  I would give just about anything to get in sooner but no can do.  *sigh*  Apparently no one cancels or postpones their appointments with a neurosurgeon.  Go figure.

Wednesday, July 1, 2009

Our Potty diliemma

I have had no idea how to even start potty training Tyler. There are so many factors that lead up to NOT potty training yet let alone on how to get it to work. Knowing he is almost 4 and still in diapers is kinda crappy. I feel like people look at us weird because we are still diapering. He is getting to big for "regular" diapers and only have one more size to go before we have to do something else. Luckily he is still kinda little so we are lucky that way.

As I have read about other people with preemies start potty training and it has taken a long time. These children generally have kids with nothing else going on ( or very little.) Because Tyler's prematurity is a little more than just little kid etc and it involves his arms and legs he can't get his pants down on his own. Which leads to the first set of problems. How is a kid that can't pull down his own pants suppose to go to the bathroom if no one is around to help him? He can't. Its an impossible task. Second problem is that he can't talk. How can a kid that can't talk tell you he has to go to the bathroom? He can't. Again an impossible task.

Ty doesn't stay dry for 2 hours at a time. He has gone without a diaper for a period of time so we could "watch" how things transpire. He holds it. He holds it and then he leaks and then he stops. After a few minutes he then just pees. We are aware he knows he is peeing or he wouldn't stop. BUT then what do you do? When asked he just says no. ( The only real word he knows) He never fights you to sit on the toilet.

What we have been doing is trying to get him to wear underwear over his diaper. Nothing big but for him it is HUGE. He has only allowed us to put them on once. With over praising and what not he was happy to wear them and wore them over night. ( again over a diaper) He will wear pull ups and understands that they are not diapers and doesn't sit down to put them on but again back to problem number one. He can't pull down his pants alone. Defeating again the purpose of potty training.

Well, we have asked and asked and asked. Sat on the toilet every single time I need to and NOTHING. Not even a small drip of tinkle. Well today he spent most of his day out in our little pool on the back patio and he was diaper less. Dallas noticed the holding and walked him into the potty. After reading a Ernie is to big for diapers book and Here comes the potty train, Dallas and I got a BRILLIANT idea of bringing in his portable DVD player. In comes Barney and Ty sits... and sits and sits. I decide to pull out my camera and practice with my new lens. ( Not great with closer shots but it was fun to practice anyway) and got a few cute shots with Ty and his DVD player. Decided to check... and GUESS WHAT... WE HAD PEE PEE!!

With HUGE claps and shouts of joy Ty gave us each high five and put on a pull up and off he went. He was not interested the rest of the night but we have some cute sitting on the potty pictures.

For your viewing pleasure. Ty went Pee Pee.

( No it was not my lens or camera. He really has red eyes. He had been in the water all day)

The rest were kinda fuzzy. I was getting ready to change lenses when we realized he had peed. I guess it is one success hopefully we will get more. Here is to PEE PEE!