Saturday, February 25, 2012

Speech Therapy Medicaid Denial: Part Two

See also: Speech Therapy Medicaid Denial: Part One

The verdict is in! I'd been stalking the mailman all month, and yesterday the verdict was finally in the mail. Basically, we didn't win, but we also didn't lose. The judge refuted the state's claim that Ian did not medically qualify for the private speech therapy sessions, but did not grant us the full amount of sessions the PA was requesting. The PA requested 26 visits and the judge granted 13. After reading the multi-page decision I didn't feel good, but I also didn't feel bad. It was very anticlimactic.

The next step now is to beg our private insurance company to cover the rest of the therapy sessions that state will not. I've already got the list of information to submit to petition them for the coverage. Fingers crossed.

Then, repeat the whole process again with physical therapy, which has also been denied. Sigh.

Wednesday, February 22, 2012

First Steps?

When Ian was measured for his wheelchair last March, I could hardly wait for it to be delivered, though they told me to expect a three to five month wait. Ian was starting school that September and we thought his having a wheelchair was vital to that new beginning. I was also eight months pregnant with our second child and couldn't foresee how I was going to carry a new baby around as well as a three year old. I was so antsy to get that wheelchair; it meant independence for Ian, and also a little more for me as well.

Now that we've had the chair for about half a year, I'm starting to wonder if we're on the right path as far as Ian's mobility. I've done my best to make peace with Ian being in a wheelchair, but I've talked with other SB moms whose kids have much higher lesions than Ian's and some of those kids are walking with braces. Spina Bifida is so tricky because every case is unique, so I know I can't compare him to other kids, but I can't stop myself from wondering if we should be doing more to get him to walk, even if it is temporary. This week I talked with his physical therapist about the possibility of getting HKAFOs, which would go from his hips all the way down his leg and under his foot. These braces would lock his legs in place so that he could stand, and with a walker, be mobile on his own two feet. As a mother who has never seen her child walk, I can imagine that seeing Ian walk would be one of the best days of my life. Though he does really like his chair, he might like being able to move around like his peers even more. The downside is that, for him, walking would be very taxing because almost all of the effort would have to come from his upper body. The bigger he gets, the more effort it will take to walk, and because of that he may prefer not to.

If nothing else, Ian using HKAFOs just to stand will help his muscle tone and promote long bone growth. They may also make it easier for him to transition in and out of his wheelchair. I don't know too much about them yet, but I'm going to learn enough to make a decision about if they are right for Ian. I wish he was old enough to tell me what he wanted. Sometimes it's so hard to make decisions for another person that will affect them for the rest of their lives, especially when that person is your child.

Wednesday, February 15, 2012

Previously on "Parenthood"...

Last night, after the kids were in bed, I settled down on the couch to watch one of my favorite shows, "Parenthood". In one of the opening scenes, Max (who has Aspergers, a form of autism), wants to sit out of gym class because none of the kids picked him to be on their basketball team. He motions toward another kid, in a wheelchair, who is sitting on the sidelines playing video games. The gym teacher says the wheelchair kid (Micah) is sitting out of the gym class "because he has a disability". Max declares that he also has a disability, and should be allowed to sit out as well.

I was not even able to enjoy the rest of the show (honestly, I can't really even remember much of it), I was so upset and angry about this opening scene. That the show would protray a child in a wheelchair sitting out of gym class because of his disability was plain ignorant, in my opinion. I can't imagine that there is a single public school in this country that allows students with disabilities to just sit out of activities and do something like play a hand-held video game instead! A child in a wheelchair is perfectly capable of playing basketball, and those that do not or cannot participate in gym class with their peers are in adaptive phyisical education, not sitting on the side doing nothing while the "normal" kids play basketball. Ian is in adaptive phy.ed. twice a week at school, and it is his favorite class. I would throw a fit if I found out Ian was sitting off to the side just watching while his peers were having gym class! Children in wheelchairs (and all kids with disabilities) need physical education in school just as much as any other child.

During the episode, Max and Micah become friends, and at the end Micah comes over to Max's house to play. Micah's parents tell Max's parents he has spina bifida and give them a list of instructions for Micah while tearfully telling them that they are so happy because Max is Micah's first friend. These kids aren't 3, or 5, or even 8; they're 11! This kid is 11 years old and has never had a friend? Just because he's in a wheelchair? I know this was supposed to be a touching and relatable moment for parents who have children with special needs, but really...11?! It was like they filmed one of my worst fears for Ian and then showed it to me on TV!

"Parenthood" should be commended (and has been, a lot) for highlighting special needs kids and bringing attention to autism, but shouldn't stereotype other disabilities in the process. I understand that the "point" of Micah being added to the episode was to show Max breaking out of his comfort zone and making a friend, something that doesn't come easy to him, but the writers could have had them become friends a variety of other ways rather than sitting on the sidelines during gym class because of "disabilities". The boys could have played basketball together, showing the other kids in the class (and the viewing public) that they could do it as well.

Point being, I'm sure a lot of thought and research goes into the writing for the character Max, and the same thought and research should have been done for the "wheelchair kid" character. As a parent who has a child in a wheelchair, I was disappointed in the portrayal and think the show could have come to the same point of relationship with the boys a much better way.

Monday, February 13, 2012

Win-Win Weekend

Yesterday, Ian returned home after spending the weekend at his grandparents' house. They live about an hour and a half away from us, so it isn't too often that Ian can partake in an over-night all by himself. My anxiety on Friday before he left was, in a word, high. I was running around packing medicine, catheters, another medicine, and of course, Blankie, Slumbers, and Personal Penguin, all while trying to get both kids to eat dinner. As my parents left with him, my mom said "Don't worry about him, he'll be fine. Enjoy your time with just Lydia".

Saturday morning we got up and went out to run errands and buy Valentine's Day presents for the kids. I have to admit, the increased speed and ease with which we moved without Ian was noticeable. No lugging the wheelchair in and out of the car at every stop, no fighting with a screaming Ian who is holding tight to the wheels to prevent us from pushing him in a direction he does not want to go, no eating out only at places his delicate gag-reflex and picky palate will allow, and best of all, no holding up the diaper-changing station in the public restroom for 20 minutes while we cath him. Having only one kid is a breeze!

Whoa. Did I really just think that? Oh boy...the guilt rolls in. Is Ian more work? Yes. Is he worth it? Yes, definitely.

Meanwhile, Ian is at the children's museum with his grandma and grandpa having a ball. He's driving a pretend firetruck, learning about recycling, and eating all the mac & cheese he can hold. Justin and I get a little bit of a break, Lydia gets some one-on-one time with her parents, and Ian has a great weekend getting spoiled by his grandparents. Win-win.

Playing at the children's museum with Grandpa

Monday, February 6, 2012

Technology Boy

Like a lot of kids these days, Ian loves technology. He can play some of the simple motion-control games on the Wii, and Nintendogs on the DS. He begs to play with our cell phones, can completely use the TV remote, and could spend hours flipping through (and probably accidentally deleting) the pictures on the digital camera. In this everything-technology age, it's probably a good thing that he can easily figure out gadgets, but it can be concerning as a parent when all your child wants to do is play with screens, instead of real toys.

Ian playing Nintendo DS
 Besides being a source of entertainment, some electronic devices can really aid learning and teach skills. Ian has some fine motor delays and we've found that touch screen devices such as the Nintendo DS and the iPad really motivate him to work on fine motor skills. Recently he began writing letters unassisted on the iPad, and can now write "cat" and "Ian" with only some verbal help. He's also able to communicate better with his iPad app Proloquo2go. Even letting him play Angry Birds for a little while helps with his motor control and finger strength. At this time last year he could only hold up one, two, or five fingers on his hand. Now he can do any number rather effortlessly.

Ian can write his name on the iPad touch screen
 Though much of Ian's world revolves around when he can play with his iPad or our cell phones, we try to limit how much he uses them. Since eating meals is one of Ian's challenges we use iPad time as a reward for eating well. He's learning that he needs to show good behavior to get the things he wants, and that what he wants will be taken away if he's throwing tantrums. The best strategies we've learned is to set expectations, boundaries, and time limits when it comes to technology.

No doubt, Ian loves the Nintendo DS, our cell phones, and his iPad, but will usually forgo them all to have a book read to him, or to play any game where he gets to throw something. As long as he continues to value books and actual toys along with screens, I can be a content parent.

Ian reading to his little sister