Well. I'm going to do it. I'm going to spread the worry. Apparently it can help when you're going through a rough patch. Well, we are here at the Geurts residence. Not a REALLY rough patch, considering how much we've been through in the past, but you know, kinda stinky.
It all started Monday when we visited the Waisman Center... you knew this was coming. I was dreading this appointment because I knew we'd get bombarded with TONS of information (all important to know, but still). It wasn't so much the "news" that was difficult to hear because a lot of it we already knew or were expecting. We visited with an amazing speech pathologist named Anne Heintzelman who will be starting bi-weekly speech therapy with Jayce (it's about time... we've only known he is deaf for 5 months). We met a nutritionist who was very happy with Jayce's overall growth. And finally, we met with a developmental pediatrician who informed us that Jayce has mild gross motor developmental delay. She was also concerned with his hypertonic muscle tone in his core and lower extremities, which could delay his motor skills even further. She was able to rule out any severe brain injury when she didn't see any primitive reflexes (toe curling, legs crossing when lifted, standing on his tippy toes, etc), but was not able to rule out a Cerebal Palsy diagnosis completely. She recommended Jayce be followed by a Physical Therapist monthly to work on his tight muscles and told us to come back in April. By then, she should be able to determine a CP diagnosis or not, but reminded us that some doctors need up to two years before it is given officially. Like usual, we just wait. We work on things a bit and try to do some living in between.
Again, it wasn't so much the "news" that was difficult. Of course, the possible Cerebal Palsy diagnosis is scary and it hasn't been mentioned before. I try to remind myself that CP is like anything else. The spectrum is HUGE! He could still walk and run and play just like any other kiddo, but it may just take him longer and a little more practice to do it. The "news" wasn't bad, I guess. It was the fact that we were there. I still struggle with the fact that this is our life. Our new normal. Visiting a neuro-surgeon, opthamologist, audiologist, speech therapist and now a developmental pediatrician. Sitting in a room with one of those mirrors, you know, like an interrogation room. Eek! The nurse opened the blind on the mirror and I knew people were "observing" him. Taking notes. Watching his interactions with us. His movements. How he eats. And who knows what else. Again, I'll remind myself... our appointment went well. It definitely could have been worse and I now feel for those parents who receive not-so-good news at these scary places. Yuck!
In addition to all of this, I've been busy working with our insurance company to pay for the therapies they are recommending. Not fun. We have wonderful insurance; Jayce will receive 50 therapy sessions (whether that be speech, physical, occupational or vision therapy) per calendar year. No co-pay! After that... we're on our own. Not bad for now, but when he's 18 months (and beyond) our therapy will greatly increase to AT LEAST once a week. So, that's a lot of money to come up with out of pocket. Not to mention our plans for a Cochlear Implant. The insurance company will cover 100% of 1 implant. One. So, cross your fingers that he only needs one! Hearing aids are covered, along with the hearing aid molds. One per ear every 36 months. We will not lose them. We will not lose them!
In my quest to understand and learn more about what to do if your child has a "disability" I've found that there are many resources out there for families to help with not only the physical demands that your child needs, but also the financial burden those needs bring. There's Social Security, Medicaid (BadgerCare), The Katie Beckett program, Family Support Services, Birth to Three, Parent-To-Parent, the Deaf Mentor Program, Guide By Your Side (and I'm sure much more, but that's all I've researched, which is PLENTY for now!) In addition to Jayce's therapies and the overall family support we'll be receiving for the next few years from some of those programs, we are looking for a little financial assistance as well. Even though we are fortunate enough to have insurance that will cover most of Jayce's needs, there will definitely become a time when we need help. My goal in life is to give him EVERYTHING he needs, of course. Some of the programs I mentioned are income-based like Social Security and Medicaid (with some exceptions, of course). In a nutshell, if you make too much. You don't qualify. That's us. We're millionaires. Other programs are based on the severity of his disability. When I called Katie Beckett (I talk about her like she's an actual person not an organization) I was asked, "So, what is his diagnosis?" Um. Hmmm. "Well, profound, bilateral hearing loss and mild gross motor developmental delay," I stuttered. "Anything else," she asked? (As if that's not enough!) She explained that this wasn't really a diagnosis and that he probably wouldn't qualify based on this fact. I found myself explaining to her that they haven't ruled out CP to which she responded, "Oh! Now THAT would really help!"
She said we were welcome to apply, but explained that it is a very lengthy application and that perhaps we should wait until he's a little older and has a more severe diagnosis whether that come from a pediatrician or a psychologist or a neurologist. The same thing happened with Family Support Services.
So. Now what? I feel like my kid is one of those who could easily fall through the cracks. One of those kids who is considered "disabled", but isn't severe enough to get everything he needs. And get it NOW. I had to request that a Physical Therapist come from Birth to 3 to evaluate him. I saw the delay even when they didn't. I have to request that my primary care doctor approve visits to the Waisman Center and other therapies. I have to insist that he be evaluated in the Audiology Booth and make phone call after phone call requesting that we conduct our next ABR (Auditory Brain Response test) so that we've got the information we need for those Cochlear Implants that he is getting at 12 months of age. I'm INSISTING that someone, anyone, everyone helps us get the ball rolling. I WILL NOT look back and think, "Coulda, Woulda, Shoulda..." Nope. Not for Jayce. This is too important. So, that's me. That's how I deal with all of this, I guess. I am obsessed. I never give up. I advocate for him. I'm his biggest cheerleader (and I'm GOOD, I was a cheerleader in high school, afterall!)
Adam, on the other hand, is so that Daddy. He supports me, but I know I stress him out more than he'd like. He's still so positive. So optimistic. He thinks Jayce is doing GREAT. He sees that his muscles are a little tight, but only when he gets frustrated and wants to switch positions. He knows he doesn't move and sit up as well as Wil did at this age, but it doesn't worry him. He lets Jayce be Jayce and doesn't pressure him. For this, I love him. Adam is amazing. He's strong and hopeful and the glue that holds me together. He handles this in his own way... he takes on the financial burden. Maybe it's a guy thing. Maybe it's because he's the only one that works around here and the only one who really provides for our family. This past week has been hard for him too. He's been consumed with figuring out how we're going to pay for all of this. He's insisting that we sell all of our vehicles and get older (and yet, still reliable) cars to cut on gas and to get rid of our monthly car payment. He's selling the camper too. It's hard to see these things go and even talk about the fact that we won't be able to go camping (those 3 silly times a year), but I know this is what we need to do right now. We need to get financially stable and prepare for the next few years before it really impacts us. He promises me that once we get our barrings, we can get a camper again. Jayce is more important, really.
Ok. I'm done. In a nutshell, having a child with a disability means so much more than a simple diagnosis. It causes stress that many people don't even think about. It's hard not only on the child who has to work a little harder in life (you wouldn't know this by looking at Jayce... he's happier than a clam, which means we're doing something right), but on the family too. With all of this, I'm reminded to stop. To look at all that I have that is good. Two happy boys and a husband who supports me in my darkest days... not matter what. In the end, that's all we have... Faith, hope and love.
My message to you: if you see a family today who has a child that is disabled, whatever that disability may be... Look into their eyes. Don't look away. Smile your biggest smile. Not one of pity, but one of hope and compassion and try to let them know that you support them. That you believe in them and that you understand that it's gotta be hard, but that it's amazing that they are choosing to live. Also, kiss your kids today. Smooch them A LOT!
And for my own vanity... check out these new pictures taken by our friend and photographer, Jonelle Degenhardt!