Tuesday, February 17, 2009

We may not have it all together... but together, we have it all.

I was in Jamestown last week because of a counseling appointment for Sam, and afterward, we took some time to browse the shops in the local mall. There was a little crafty store that sold plaques and candles and rustic-looking home decor that caught my eye, so I warned Sam and Kiki it was a "breakable" store and went inside.

Kiki immediately headed to a display for those peel'n'stick words for your walls ~ I don't know what they're called, but you know what I'm talking about. Since I rent an apartment, I don't know why I was browsing through them, but I'm glad I did. One of the sayings caught my eye and really hit home to me.

"We may not have it all together... but together, we have it all."

My family has been through a lot recently: we had a house fire in November, which meant we had to live with family for a couple weeks and then move into an apartment; Sam's been having medical issues which require several trips all over the place; Sam's also been having difficulties at school with behavior issues lately; I've had to take off from work to deal with the house fire and Sam; Kiki's starting speech therapy today; finances are extremely tight right now; my apartment isn't unpacked or settled yet... it's all just piling on and I've long since hit the point of being totally overwhelmed.

Not having the children's father around plays into it too. While their father was at first completely nonsupportive with Sam's medical issues, he's now coming around to agree that I'm right. But he's also 1,600 miles away right now too, so he's unable to shoulder any of the burden. And I have a feeling there will be more testing and trips in Sam's future as well.

This is why that quote hit home with me. I certainly don't have it all together. My house is in a constant state of disarray. My kids are frequently late for stuff because I'm so unorganized, or I forget about the appointment until the last minute (I've been getting better at that, thanks to my Palm Pilot!). We don't have a normal routine, because it's constantly being disrupted by trips and appointments.

But... we're together. We have our basic needs (food, shelter, clothing, and love) met. Sam and Kiki both know that while I'm not perfect and I forget some stuff, I'm always going to be there for them. They love me and I love them.

It's hard being Super Mom, but I've come to realize my kids don't need Super Mom. They just need me, a super mom.

Sunday, February 1, 2009

Idiopathic Toe Walking and the Shriners

Sam and I just got home from another trip to Minneapolis to visit the Shriners Hospital. My son has idiopathic toe walking, which simply means Sam walks on his toes. His orthopedic specialist prescribed serial casting (articles on serial casting are coming soon!), which involved six weeks of casts and traveling back to Minneapolis every other week to get them changed. But now, Sam is out of the casts and into AFO braces (again, articles are coming soon!).

I am so glad he is out of his casts! What a pain in the butt those casts were. Not only were they stinky, Sam was downright lethal with those casts. He killed several toys by stepping on them, much to Kiki's dismay. She learned very quickly to keep her toys up off the floor!

Sam's treatment would not have been possible if not for the Shriners. The Shriners pay for everything, including the transportation (in our case, Amtrak) to get to the hospital and back. Any medical devices (such as wheelchairs, braces, etc.) are paid for by the Shriners as well. The doctors there are the best and the whole atmosphere is geared toward making children comfortable. I'm so thankful for the Shriners. They truly are blessed people.

Because Sam's idiopathic toe walking and the Shriners (and even Amtrak travel!) have become such an integral part of our lives, I've written several articles on the subject:

Idiopathic Toe Walking: Definition, Symptoms, Causes, Diagnosis and Treatments
Do you have a child older than three who constantly walks on her tippy toes? Does your child bounce when he walks and runs? Is she unable to press her heel to the floor? These are all signs of idiopathic toe walking.
Click here for more...

Children with Disabilities: How to Deal with Teasing in School
If your child has a disability, he will encounter teasing in school. These are some steps to take to curb the amount of teasing your disabled child will have to endure.
Click here for more...

Shriners Hospitals for Children: Frequently Asked Questions
As my son was a recent patient at Shriners Hospital, I've been asked several questions in regard to the care at Shriners Hospitals for Children.
Click here for more...

Who Are the Shriners?
Okay, Shriners drive little red cars in the parade and wear funny hats. But what are the Shriners really about?
Click here for more...

Amtrak Train Travel: 10 Essentials to Pack in Your Carry-On Bag
There are ten essential things to pack in your carry-on bag while traveling Amtrak. Read on to discover what's in my bag...
Click here for more...

I have several more articles on the subject of train travel and more specific articles on serial casting as a treatment for idiopathic toe walking coming up. I'm also planning on writing a couple about AFO (ankle-foot orthotic) braces. I will post those articles when they are published. Thank goodness for Associated Content ~ I'm so happy to be able to share what I know and help others who may be going through this same thing.

I don't often request anything from my readers, but this time it's that important to me to break my own rule. During our last trip to Shriners Hospital, Sam saw a neurologist. After asking us several questions, the neurologist determined that since Sam's father also toe walks, it was important to him to be able to evaluate him to avoid having to run several tests on Sam. After discussing this with my ex (who, by the way, lives 1600 miles away), he learned he has a neuro-muscular disorder called Charcot-Marie-Tooth Neuropathy Type 2 that runs in his family. His aunt has it and so did her mother. It's similar to muscular dystrophy ~ MD attacks the muscles, and CMT attacks the nerves that control the muscles. While CMT can't be diagnosed until late childhood/early adulthood, I have a sinking feeling that this is why the neurologist wants to evaluate and diagnose my ex-husband. Please keep Sam in your thoughts and prayers. Send him positive vibes. Whatever your faith is, remember Sam. Please.

Tuesday, January 20, 2009

Update to Music Class

I just now got a phone call from Sam's elementary principal. She received the email I sent out Sunday to Sam's IEP team, detailing the information I was given by the music teacher regarding Sam's expulsion.

I am happy to report that Sam is not expelled from music class and never was. The principal didn't know why the music teacher would say something like that. She said, "We would never expel a student from a class like that, especially under the condition that he is medicated before he is allowed to return. That's not even legal. We can't tell a parent whether or not to medicate her children."

The principal apologized on behalf of the music teacher. She said the music teacher hasn't been teaching long, and perhaps she just got frazzled and misunderstood what the principal said about getting things straightened out.

Today Sam will have a member of the IEP team accompany him to music class. This is a step in the right direction. We'll see how things go today :)

Friday, January 16, 2009

To Medicate or Not To Medicate

I haven't mentioned this before, but my son, Sam, is a special needs child. He was diagnosed last year as having ADHD and PTSD, but I don't agree with that diagnosis. But because of that diagnosis, he was able to get help in school from the special education department and from that, get on an IEP (Individualized Education Plan).

Personally, based on a lot of things, I think Sam has Sensory Integration Disorder and Asperger's Syndrome. He hasn't been tested for either, but that's coming later.

In spite of my reservations about his diagnosis, last fall, I had Sam put on Adderal, because of the issues we had with him last year at school. Sam asked me, "Mommy, can you fix my head?" Well, how could I not? So I took him to our general practitioner and he prescribed 5 mg of Adderal daily.

The first part of the school year was going really well. Sam was excelling in first grade, and when he started to have an outburst, his teacher was able to diffuse the situation rather quickly.

Then things in our personal life started going downhill. In November, we had a house fire. Because of the house fire, we were forced to stay with my sister for a couple weeks until we could get into an apartment. Then we had to move. Then we had to make a medical trip to Shriners Hospital in Minneapolis. (Sam suffers from Idiopathic Toe Walking.) Then we had Christmas break at school. A couple days after school started again in January, we had another trip to Minneapolis, during which we were stranded because of the weather.

Sam doesn't do well with transitions, and his behavior at school had been deteriorating since before Christmas vacation. While on our trip to Minneapolis last week, we ran out of the Adderal. He didn't take it for several days, and I didn't notice a difference in his behavior, which led me to believe the medication wasn't doing its job.

I decided at this point to discontinue the medication until we could get an accurate diagnosis. We have an appointment with a Disabilities Diagnosis Clinic in February. But until then, something had to be done about Sam's behavior, so I called a meeting with the IEP team.

We discussed his sensory issues (I won't get into all of them, because there are a lot), and how to help him get the stimuli he needs. I told the team he was off meds and I planned on keeping him off meds. For the most part, the team was supportive, except the music teacher who shot me a nasty look and then left the meeting early.

I was excited about the plans we made to help Sam at school, until the music teacher called me after school today. She told me Sam was disruptive again in her classroom and that he is no longer allowed in her class "unless he gets back on meds again or something". I was furious! After all we talked about at the meeting yesterday, and she's going to try to blackmail me into medicating my son!

I stopped listening at that point and when I got off the phone with her, I immediately called her boss, the school superintendent. He apologized profusely to me (I think because he realized that he was lucky I called him next and not a lawyer). He assured me that he would be speaking to this teacher about her "lack of tact" before she left school for the day.

Well, I had already made the decision, based on the information I had received at the IEP meeting, to put Sam back on medication for now. It has to be so hard for him during the day, trying to control his impulses but not being able to do so. So Sam is back on Adderal with an increased dosage of 10 mg daily.

Regardless of his now-medicated state, I am not allowing him back into that music class with that teacher. If she thinks she can try to force my hand into doing something I didn't want to do (nevermind that I had already decided to put him back on meds), then she's got another thing coming. I do not want my son around someone who lacks such total empathy toward a child with obvious disorders. That she would treat a special needs child as someone she "needs to control" is at least irresponsible. I know that Sam's disorders doesn't give him a free pass to misbehave, but at this point, I believe he's incapable of behaving. And especially for a teacher who doesn't like him.

Blackmail me, indeed.

Tuesday, January 13, 2009

Valentine's Day versus Anti-Valentine's Day

With Valentine's Day right around the corner, I've started thinking about how to celebrate. As a divorced mommy, I tend to want to ignore Valentine's Day altogether. But then an assignment on Associated Content got me thinking about the Anti-Valentine's Day. So I wrote a humorous little something-something on it.

Anti-Valentine's Day: Five Ways to Celebrate
by Heather K. Adams
Five ways to celebrate the Anti-Valentine's Day guaranteed to make February 14th a little less sucky.
Click here for more...

I started digging around on AC and found some other articles with a less-than-favorable outlook on Valentine's Day.

Things You Should Know About Valentine's Day
by Rodney Roller
Here are few reasons why I loathe Valentine's Day.
Click here for more...
(This one is perhaps my favorite!)

Worst Valentine's Day Date Ever
by Alisha Christian
With Valentine's Day on the horizon, I thought I would share my worst Valentine's Day date ever.
Click here for more...

The Ten Best Anti-Valentine's Day Songs
by RonHart
The ten best anti-Valentine's Day songs
Click here for more...

... and of course, the (anti) Valentine's article I wrote last year:

Top Six Songs that Celebrate Being Single: How I Survived My First Single Valentines Day
by Heather K. Adams
I found myself searching for songs that really celebrated and rejoiced the single life. Or at least didn't make it suck so bad. Here are my top six choices.
Click here for more...

Even though you may not feel like celebrating, you shouldn't neglect the kiddos on Valentine's Day.

Unique Valentine's Day Gifts for Kids
by Chloe Xanthis
Don't forget about the kids this Valentine's Day! This article contains 10 great gift ideas for kids young and old!
Click here for more...

I hope everyone has a wonderful Anti-Valentine's Day!