Monday, January 30, 2012

Speech Therapy Medicaid Denial: Part One

This past October, Ian's Prior Authorization (PA) for his private speech therapy was denied by our state. His therapist had made the PA for one 45 minute session per week, which is the same frequency that he had been receiving for more than a year. When the PA came back denied, I was shocked (and angry). While it's true that Ian attends school part time now, and does receive speech therapy there, his private therapy is a very different and important part of his therapies as a whole. We've seen so much progress with Ian's speech and communication since he has starting doing school therapy in addition to his private therapy. Denying the private therapy is putting the brakes on progress that is just beginning to gain momentum.

Anyway, I started the appeal process with the state by writing them a letter stating that I wanted an appeal hearing and why I thought the decision should be reversed. The state then countered with a letter detailing why they denied the services and their argument for not reversing the decision. I then received a letter notifying me of a phone hearing with a judge. I called the judge and asked him if I could bring Ian in for an in-person hearing instead of a phone hearing. I said I didn't think he could make an objective decision about my son's case unless the hearing was in-person. He said no, he would only do the hearing by phone. Because of his inflexibility, I requested a new hearing date and time, hoping that they would schedule it with a different judge. I waited three more weeks to get a new hearing letter, and when it came it was another phone hearing, but with a different judge. I proceeded to call that judge and request an in-person hearing, and she easily granted my request.

The hearing is tomorrow, and I believe I'm on the cusp of developing an ulcer. I have letters recommending the private speech therapy from Ian's pediatrician, as well as the specialist he sees at spina bifida clinic. His therapist will attend the hearing via phone, and Justin and I will take him to appear in front of the judge and make statements for our case. Never having appealed a state medicaid decision, I'm hopeful that the judge will overturn the decision based on the recommendations and seeing that Ian is a three and a half year old child that does not speak and needs as much intervention as possible. We will see...stay tuned for Part Two: The Decision.

Wednesday, January 25, 2012

Three Little Words

Ian says three words: dad, mom, and eat. That is also the order in which he first said them. When he turned 15 months and still hadn't spoken, his pediatrician referred us to a speech class for parents. It met for two hours over four Saturday mornings to try to teach parents to teach their kids to speak. We watched endless Power Point presentations about how to talk to our child so they would be more likely to talk back to us, as if we had never spoken to a child before, let alone been one. We did exercises in pairs, practicing what we'd say to our child and predicting their possible reactions. It was torture. Ian continued to do little more than babble, point, and whine, though his comprehension of what was being said to him was right on par with his age.

At 18 months, Ian left the world of daycare (that whole situation is another story I hope to post someday) and started staying at home with me. I immediately started taking him to the library for story time, and also borrowed every baby sign language DVD they had. We started out watching one 30 minute video every day at the same time mid-morning. When the lady on the TV did the sign, I did the sign too. After we'd watched it a few times, I encouraged Ian to do the signs too, though he was not at all interested. At night, I'd teach Justin the signs I had learned, and we'd purposely use them over and over to each other in front of Ian. We'd say "more please" and "thank you" and "play ball" all evening with the hope Ian would try to mimic us. No luck. He had a system of pointing and whining that was working perfectly well and he was not about to change it up.

The first time Ian did a sign on his own was one of my proudest days as a mom. We were playing in the living room and he pointed to a ball he wanted. I asked him what it was, and when he didn't respond I signed "ball" and said it. Suddenly, he looked down at his hands and watched them as he slowly did the sign for ball. I made a huge deal out of it, praising him and being ecstatic. My positive response spurred him to try more signs, and before long he could do "more", "milk", "please", and "book". By the time we took him to his two year pediatrician visit, he had about ten signs, but still no words. He was referred to speech therapy, and started 45 minute sessions once per week.

Ian's little sister was born this past April, and when he realized she was probably here to stay, I think Ian decided he better step up his game. Though he had around 30 signs in his arsenal, this past May he finally said "dad" out loud. Again, Justin and I made a huge deal about it, so Ian probably said it about 500 times without stopping. "Mom" finally came in July, while he was sitting at the table and I was cooking dinner. I remember crying and laughing while he joyously said it over and over; it was the best sound I think I've ever heard.

We hoped these first words would start a landslide that would lead to sentences by the end of the summer. That hasn't happened so far, but Ian is making so much progress, even though it seems very slow. He can put multiple signs together to form sentences, and is much more willing to try new signs when he's shown how to do them. Having been a very talkative child myself, many people who know me have told me that once Ian starts talking he'll never stop, and then I'll miss those days of quiet. I seriously doubt that, since some days I feel like I'm going crazy with no one to talk to while Justin is at work. I long to have conversations during the daylight hours, even if it is with a three year old.

Thursday, January 19, 2012

Butt of the Joke

Yesterday morning after I dropped Ian off at school, I was checking my Facebook newsfeed and I saw a status from a close family member that said something like this:

The dating pool is like a parking lot -- all the good ones are taken and the ones left are handicapped.

My gut reaction upon reading this was anger mixed with sadness. Anger because it had been said at all, and sadness because it had come from someone I was close to. I didn't want to make a quick, angry comment in response, so I said nothing for a few hours, and, honestly, forgot all about it. Later in the afternoon I saw the status again and decided I couldn't say nothing. I simply commented on the thread "Just so you know, I don't appreciate this comparison". An hour or so later, the poster messaged me to say he was sorry and he had taken the status down. I replied back that I knew he hadn't meant it about Ian, but that these kinds of statements or jokes are hurtful to me because someday they could be, and probably will be, hurtful to Ian.

Teasing and name-calling are normal parts of childhood, and I accept that, but what gets me down about people making statements such as this is that it's implying a handicapped person is actually a lesser type of person -- not worthy of dating, in this case. Thinking that people could potentally say that about my wonderful, smart, funny child, just because he has a disability, is enough to make me want to stay in bed for the rest of my life. I have dreams for my child just like any other parent -- that he'll go to college, get a job, have a family. I don't know for sure that any of those things will happen, no one ever does, but I'd like to hope that society doesn't think they can't happen because he has a disability, because that's just not true.

I told my family member that to make it up to me he should post a link to 3E Love's International Day of Acceptance (which is this Friday!) on his Facebook page. He did.

Friday, January 13, 2012

Day of Acceptance

Another site I follow, 3E Love, is starting an International Day of Acceptance for people with disabilities. They've created a logo that is the traditional wheelchair logo, but with a heart, and are asking that people wear their logo on January 20th to support the rights of people with disabilities, and just to show love in general. I think this is a great idea, and I've bought some of their logo buttons to give out to people in Ian's life.

I can see how people not in the "special needs" community wouldn't understand days like this. Before I had Ian I probably wouldn't have given a second thought to something like this when and if I came across it on Facebook. For those of us that do have people with special needs in our lives, days like this are important and meaningful. It's a day we can hope that people are thinking about our loved one as they go about their daily life.

Right now, with Ian still so young, I'm the one out there looking for a community, for inclusion. Now, while he's young, is when I want to find that community so that when he's older and comes to me looking for it, I can show him what has been helpful for me. I know the day is coming when he will realize he is different, and possibly feel bad about those differences. I want him to know that his family and friends are there to support him, and others out there he may not even know can give support too. Groups and initiatives like 3E Love's are trying to do just that.

Monday, January 9, 2012

Off The Charts

The only time in recorded history that Ian has eaten a banana.

After Ian was born, he was in the NICU for ten days. At 8 lbs. 11 oz., he was easily the largest baby there. The other seven babies in his "pod" were all tiny preemies, and then there was Ian, huge by comparison, down at the end. Fast forward to present day, where Ian has fallen off the bottom of the weight charts. He drinks whole milk, plus two Pediasure shakes a day, in addition to his meals, and yet we can't move him past 25 lbs. It's one of my biggest frustrations because every time we go to clinic or see the pediatrician it's always the same, and it makes me feel inadequate as a parent.

Ian was a great eater and gained weight perfectly until he was around 18 months old. The transition from pureed food to regular table food was a difficult one, for all of us. Because of his spina bifida, Ian also has a Chiari II Malformation, which can sometimes cause apnea or swallowing issues. His neurologists have determined that his malformation isn't severe enough to hinder his swallowing, but he does have a really sensitive gag reflex. He can gag, or even throw up, just from seeing someone else eating a food he finds unappealing, or simply from seeing someone chew gum. When he began eating "real food" he choked and gagged on almost everything; it was a nightmare. He began to refuse to try new foods, preferring to stick with a few "safety foods", which were mac & cheese, cut up hot dogs, and applesauce. We've managed to add a few other foods to his menu: grilled cheese, toast with Nutella, and pudding, to name a few. Problem is, he still won't gain weight, and feeding him a meal can take a hour or longer. We have to beg, bargain, and threaten to get him to eat on a daily basis. Asking him if he is hungry or wants to eat always results in a vehement head shake, usually accompanied by whining for emphasis.

When we came to terms with the fact that Ian would not use his legs, and therefore not walk or run, I was concerned that his weight would get too high from inactivity. Never in my wildest dreams did I think he'd be needing weight checks because he was underweight! We've been to nutritionists who've basically said to just put extra butter and cheese on his food, while others say it is just part of a typical phase of picky eating that he will get over eventually. After two years, I'm pretty tired of waiting for him to get over it.

Friday, January 6, 2012


When we found out Ian would be born with spina bifida (when I was 17 weeks pregnant), they told us that his spinal lesion was very small, and since it was also very low on his spine it should have a very minimal impact on his ability to walk. They told us he would probably need ankle/foot braces to give him stability, but he would walk, drive a car, and hardly notice his condition. Then he was born, and we were met with the reality that he couldn't really feel or move his legs. Not enough to bear weight on them anyway. He started both physical and occupational therapy before he was a month old, but the focus was more on building strength in his trunk and upper body to compensate for what was lacking in his legs. At nine months old he got his first pair of AFO braces, which go around his foot and up to his mid-calf. The AFOs allow him to stand if he is strapped into a stander.

Since his trunk muscles aren't very strong, Ian can't sit up well without support. Once he outgrew his infant bath seat, we needed something to keep him upright and stable in the bathtub so we could wash him. Luckily, we have a really great resource called Katy's Kloset nearby, and we were able to borrow a bath seat from there. He also needed some place safe to sit just around our house, or anyones house that we would take him to, so after he grew out of the regular Bumbo seat we bought a "special needs" bumbo-type seat for him. It's the same thing as a regular, $40 Bumbo seat, but it's bigger and because they label it "special needs" they can charge $200 for it. It was so useful that we actually bought two of them and one now stays at Ian's school so he can use it there.

Once he began sitting upright more in his bumbo, the weakness in his trunk muscles led to a curvature of the spine. That's right, scoliosis. In a one year old. By the time he was two it was severe enough that action needed to be taken, but it was too early to do surgery to correct it. So, at two and a half he had a full body brace made that encases his whole middle in plastic. He wears it all the time except for when he is sleeping. It's hot for him in summer, but his sitting stability is so much improved that we'd never want to go back to not having it.

Then there's the wheelchair. All the adaptations we've had to make in Ian's life so far were for the eventual addition of a wheelchair. With his legs positioned correctly in his AFOs and his trunk supported by his brace he became ready for his first wheelchair. He was measured for it a few months before his third birthday, and received it five months later. He even picked the color, toxic green. The picture on the top of the page is the first picture of him after he got his wheelchair, and that picture brings me so much joy because he looks so happy and proud. Just like Justin and I, he knew his life was changed that day.

We've come a long way from the days when the doctors were telling us that Ian's spina bifida would have a minimal impact on him. We've had to accept the fact that it is and will be a major part of his life. The bright side is that he is happy with himself, as much as a three year old can be. He's funny, smart, and quirky in a way that is very endearing. Knowing that he is happy helps me to be happy too.

Monday, January 2, 2012

Winter Wheels

Sunday evening was the first real accumulating snow fall here in Southern Wisconsin. It wasn't bad at all, only a couple of inches, but it brought about a brand new experience for Ian in his wheelchair. When I took him to therapy today, I got the wheelchair out in the parking lot, set him in it, and pushed him into the building. Once inside, he wanted to roll up to the front desk to say "hello" to the receptionist, Miss Joy, and as he did so, was met with an unpleasant surprise upon grasping his wheels. He gave one push, then recoiled his hands, examined the cold, wet, grime on them, then looked to me for what should be done next. Thanks to Miss Joy, paper towels were produced and I was able to dry his hands as well as his wheels so that he could push himself around as usual.

Now, winter has only just begun, and there will be many more winters after this one, so what am I to do every time we go out into the snow with the wheelchair? Carry a roll of paper towel in my purse to dry his wheels once we're inside? Never let him push himself because his wheels are wet and dirty? Invent some kind of plastic wheel baggie that can be torn off and discarded once inside? What do others in this situation do? I know there are gloves that can be worn, but just the idea of having to touch wet, dirty wheels, even through gloves, seems unappealing. I'm sure we'll figure out a solution that works for us all, but I think I'll be stashing a roll of paper towel in the car for the remainder of winter.