LJ’s Helping Hand

We’ve been working a lot on the foundation.  Although we haven’t even done our first event yet, I feel a sense of accomplishment.  

Ever since LJ “graduated” from Early Intervention, I’v’e been wanting to help others.  The therapists we had helped us through everything.  The blogs I read gave me a sense of community.   My readers gave us support.

It’s amazing how many children out there have special needs.  We’ve only just started this foundation and I’ve already received a few emails.  Mothers who feel so alone and isolated.  Thrown into this “special” world where only those of us who are already there, understand.  

In the beginning, I wanted to help get equipment or therapy insurance wouldn’t cover for families.  But after thinking about it, I realized I wanted to do more.  I wanted to lend an ear.  Some encouraging words.  I wanted to let other “special” parents know that they are not alone in their struggles to do whats best for their child.  That their thankless sacrifices aren’t unnoticed.  That someone knows how hard their battles can be.

Another goal of mine is to educate those who care about these special families.  Whether they are friends or other family members.  People are so uncomfortable with those who are different.  They’re afraid to say the wrong thing or just don’t know what to say.  They don’t know how they can be supportive.  They end up just avoiding the subject all together.  To me, that’s the worst thing you could do.  It’s like you’re pretending we don’t exist.  I’d rather you say the “wrong” thing and know that you cared, then nothing at all.

I have to remind myself that I was once like them.  I didn’t know there was another “world” out there.  LJ opened my eyes.  I wouldn’t have know what to say if the roles were reversed and it was my best friend who had a child with special needs.  I wouldn’t have know that saying nothing was hurting and isolating them. 

My goals for the foundation may be a little broad but the response to our Facebook page alone is proof enough that we’re on the right track.  That there are a vast number of families out there feeling lost.

And, I’m happy to say, there are also an equal amount of other families wanting to learn how they can help.Image

I’m back!

I never intended to leave for this long.  Looks like life had a different plan for me.

I’m now happily married to my soul mate, Bryce.

I had a beautiful baby girl in November.

Sofia

I have a first grader…

LJ’s first day of first grade

And a preschooler…

Noah’s first day of preschool

I’m glad to be back in the blogging world.  There are so many families I miss keeping up on.  Please be sure to check out LJ’s Helping Hand Foundation.  We’ve just started and can use as much support as we can get!  Be sure to “Like” us on Facebook.

Happy New Year!

We survived the holidays.  This time of year is the worst for me.  I can’t help but think about Grandma and Grandpa and the many family holidays we spent together.  I often wonder what they’d say if they could see me now.

To add to the stress of the holidays, Louie and I broke up.  It’s not something I’d really like to get into.  It was my decision, albeit not an easy one.  It’s been an adjustment.  And despite what other people see, it hurts me too.  I just need to be strong for my boys and me.

It’s been a lot to deal with.  The boys were sick for 2 weeks with that stomach bug that was going around.  24 hours of vomiting and 14 days of diarrhea.  I didn’t get sick, thank goodness, but I was so exhausted.  I’ve never done so much laundry in my life.

I never imagined my life here at 25, unmarried, with 2 boys, 1 with special needs.  I’m so thankful though.  My boys are the light of my life.  They make me strive to be a better person.  They saved my life in so many ways.

Next week, I start school.  I have a few hurdles to get through in the next couple weeks but I know I can get through it.  

Have a safe and happy new years.  I’ll be glad when 2010 is officially over.

Updates

I don’t even know where to start.   Life has been… hard, different, sad, busy.  It’s been a couple months so here are some things that have been going on.

  • LJ got his Botox in October.  They raised the dose since he’s gained almost 9 lbs since his surgery!  Every time we go into this appointment I worry about it’s effectiveness (it decreases after each use).  But it’s still working very well! 
  • A few weeks ago I get a call from the hospital’s financial department (never good).  Turns out they were letting me know that our state Medicaid will no longer be covering Botox in the lower extremeties.  Honestly, WTH?  What could possibly be the reason to justify this BUDGET cut.  It’s so clearly has to do with money since the rest of our family has been waiting to to get Medicaid to for 5 months.  I think they’re waiting till the beginning of the year.  Luckily, I know we qualify for financial assistance so this shouldn’t be too much of a problem.  But I did cry after I got off the phone with her.  Not for us, because we’ll figure it out, but for other families.  The financial lady told me that a lot of families were very upset. 
  • The morning of October 31, two of my friends died in a car accident.  I won’t go into much detail but it was like a slap in the face.  I dated one of them in high school and although we didn’t see each other much, we were still friends.  It’s heartbreaking that they were both such young, fun-loving people.
  • Another issue that I won’t talk about yet has to do with our family.  I’m just not ready to go there yet.  But it’s heartbreaking.
  • On a good note, I was published!  Remember the launch event I went to where I met the editor?  It was a lot of fun to write the article and hopefully they’ll have it on their website soon.  I look forward to staying involved with the magazine. 
  • I’m starting school in January.  When our friends passed, I started seeing things differently.  I was just making it through life.  I’ve always talked about going back to school but I was tired of talking about it.  I’m so excited that I finally made a decision on what I want to do.
  • Louie went with his dad and got a hospital bed from a very generous family up in WI.  It’s awesome!  What’s even better is that Noah now has a crib.  I moved him into LJ’s room last week.  LJ fussed till 10:30 before Noah finally woke up and cried with him till 11:00.  I’m sure it will be an adjustment for them but I think they both love their new beds.
  • LJ had his orthopedic follow up appointment last week.  I thought for sure she’d say surgery this time.  Instead, she said his hips actually looked BETTER and to keep doing whatever it is we’re doing!  Completely different attitude then the first time we saw her.   Gotta love doctors.

I’m sure there’s more.  My brain has been on overload but I’m hoping by this weekend I’ll be able to relax.  Probably not, though, since Christmas is just around the corner!

On Bullying

I meant to do a post about this last week, on National Anti Bullying Day.  I didn’t have time but I didn’t want this to pass by without commenting on it.

Surprisingly, there is a bit of controversy over this.  Some people say that people have become too easily offended by words.  Some say that it’s a part of growing up.  Some say that our society has brought it upon ourselves due to the violent nature of television and video games.

To me, the first issue about being to sensitive over just words may be a little true.  They are, in fact, just words.  It’s their context to hurt others that’s the problem.  “Sticks and stones may break my bones but words will never hurt me.”

I find this statement false.  I was bullied.  I was pushed around because I’m short.  I was constantly the subject of ridicule because I’m half asian.  I was even teased by a coach because of my last name (he thought it was a clever play on words, I found it to be humiliating and isolating).  I didn’t have it as bad as others did, but I still remember.  I remember the shame, that pain… and to a child that’s learning to handle their emotions and who is learning about themselves, bullying can be the trigger that makes things seem like they’re spiraling out of control.

It’s not part of growing up when it results in someone taking their own life. 

It doesn’t just stop at words though.  I’ve read countless articles on students physically harassing other students because they seem different. 

It scares me.  It makes me angry. 

LJ has special needs.  He will always look different from the norm.  He might not ever be able to defend himself.  He might not ever be able to tell me that something happened.  This is one of my biggest fears.  I don’t know what I’d do if I ever found out he was being bullied.

Talk to your kids.  Role play if you have to.  Talk to them about what to do on either side, whether they’re the bully or being bullied.  Talk to them about what to do if they are a witness of bullying.  I’ve read plenty of articles where the bullying was witnessed but no one came forward.  Sometimes the victims of bullying (because they ARE victims) are too ashamed to come forward themselves. 

Let’s start instilling compassion and acceptance in our children.  The world will be a better place because of it.

Wheelchair and insurance blues

We had a wheelchair evaluation yesterday.  We actually had the DME Supplier (Durable Medical Equipment) come out in July to adjust LJ’s kid kart and do the evaluation then, but he informed us at the appointment our insurance required us to go into the seating clinic.  I thought this was a little ridiculous considering the professional we’d be seeing in the clinic know nothing about my son.  He could be having a great day where he’s having excellent head and trunk control when they see him.  Which means he probably wouldn’t get the support he needs during his bad days.  But whatever makes sense to them, right?

As I listed some of the options I researched, I could tell we weren’t going to get anywhere.  We discussed the different options in chairs.  Wheelchairs vs strollers vs pediatric chairs.  I guess we came to the conclusion that the chair we have is the best option for another year or so.  Considering my animosity towards the kid kart, you can imagine my frustrations.

We talked about future options.  The most frustrating part was how insurance kept coming up.  It really ticks me off the we have to think about what insurance MIGHT cover instead of what is best for LJ.  That’s secondary.  And with insurance, nothing is guaranteed.  Even if you have a pre-approval, they can still refuse to pay a claim. 

I found out the other week that when LJ’s insurance was switched to having straight Medicaid instead of having a provider through Medicaid, that coverage DID change.  First off, no one bothered to tell me they were switching his coverage.  I found this out after we had trouble getting one of his prescriptions filled.  But no one would talk to me since they failed to put me on his case when they made the switch.  I finally was able to talk to a medical liaison who told me that nothing would change in our coverage.

She was oh-so wrong.

Now we only get 20 visits for therapy per incident.  And less coverage for DME.  Oh, and we don’t get a case manager, which is insane to me, since according to what I heard, anyone who is switched to straight Medicaid probably needs one more than anyone else.  For those of you who aren’t sure what a case manager would do, basically she would know who we are.  She would know our story and she would be my go-to person if I had any issues.  Instead, I have to wait 30 minutes to get a customer service agent (who have been less the helpful) and then I get to spend time telling LJ’s life story.  Over and over.  And over. 

I know these issues are minute.  But when I think of other parents who struggles are greater than mine and I get worked up again.  There are so many struggles we work through on a daily basis.  So many battles we have to fight.  And we will stand up to the plate, over and over again.  But I can’t help but think it shouldn’t be like this.  Not everything should be a fight.

And yet, I expect it now.  I expect everything to come with a battle.  Every doctor’s and therapist appointment.  Every IEP meeting or school review.  Every time there’s a new prescription or a change in medical care.  Every time someone suggest a piece of equipment that could be seen as a convenience. 

I’ll continue the fight, as I know other parents will.  We do what we need to, for our children.  I know these posts can seem whiny and can come off like we’re trying to play up sympathy.  But it’s a reality we live in.  And you know what they say about a squeaky wheel.

Anyone got some WD-40?

Updates

It’s been a busy couple of weeks!  Here are a few reasons I’ve been MIA and some updates! 

  • We finally have a nurse!  It took going through one nurse and three different interviews to find her, but I think it was worth the wait.  She’s organized, flexible, and very helpful.  She’s open to learning therapies to do with LJ and isn’t afraid to push him but also knows when he needs a break.  It’s been a huge stress off my shoulders, giving me more time to work.  Now if only there were more hours available…
  • My dad moved.  I took it harder than I thought I would.  I think it’s because I realized he wouldn’t be within a few minutes drive where I could escape.  And complain with understanding and without being judged.  I’m proud of him, though.  I know he’s just doing what he needs to do.  I miss him though.
  • Insurance change.  We’ve almost always had Medicaid for LJ but we had a provider through them.  Well, when LJ got his G-tube, someone decided to switch him to straight Medicaid, without anyone telling me.  No letters or anything.  I finally figured this out after spending hours on the phone trying to talk to anyone because whoever had switched him, failed to put any of his parents on the case.  So no one would talk to us!  Finally, someone fixed it.  But I was told nothing would change about my coverage.  Of course, a few weeks ago I find out this is completely false. 

             I called the Rehabilitation Institute to schedule a day with the therapists to teach our new nurse some good things to do with him.  That’s when I learned that LJ is limited to 20 visits per “incident”.  Meaning Botox, which is complete horse shit.  I’m sorry, but every time I think about this the words WTF scream in my mind.  My son will forever have this disability and it’s much easier to intervene and teach him things now then it will be when he gets older.  As he get’s older, he’ll only get bigger and heavier, and it will be hard to learn new things because he won’t be used to supporting that weight.  He only get’s Botox like twice a year.  Maybe three times at most.  I almost wish I had never done it so they couldn’t use that crap against us.

            So I call to address this issue, demanding a case manager.  We had one when we had a provider, although she was fairly new.  But guess what, they don’t provide a case manager.  So every time I call in to appeal a case or discuss anything, I have to go into LJ’s life story to some customer service agent that only knows the basics of his coverage.  I’ve been trying to look for one I can hire (hopefully to be covered by Medicaid) but I’m really unsure of how to go about this.  I’ve been pretty unsuccessful.

  • LJ has been doing so good in school.  He’s been more vocal and I know he’s always doing something there.  They built him his own play area under a table where toys dangle that he plays in when he gets to school, before they start the day.  He loves listening and even looking at the other kids!  You might not think this is a big deal but LJ use to freak out in unknown social situations where there were more than 5 people.  He also never really looked at others because he couldn’t make out faces.  I can tell his vision and even comprehension has grown.  I’ve had two therapists this week tell me they swore he’s said hi back to them.
  • Kansas City Power and Light (KCPL) is the worst company I have ever dealt with.  I won’t go into detail about the story because it really doesn’t matter.  They obviously don’t care how their customer service agents treat their CUSTOMERS like dirt.  It’s sad because I know plenty of people who could use their job and would do it better.  The first chance I have that I don’t HAVE to use KCPL, I’ll take it. 
  • I have a really exciting opportunity that I’m not going to talk about yet.  I don’t want to jinx anything, but once it’s done, I’ll be posting it here!
  • Noah is walking steady!  He’s also been saying “ba” “da” and “mum”.  He’s getting so big.  I love how he’s starting to engage with LJ.

Everyone’s been sick in our household.  I’ve held up till this past week.  Here’s hoping I don’t get it as bad as everyone else did!

%d bloggers like this: