This is the story of my daughter Oliana who was born blind. To read her complete story start with the blog titled Oli's birth. You can email me at shannongardner@live.com




Tuesday, January 12, 2010

Hippotherapy (there are no hippo's involved)

Oliana had her first hippotherapy lesson today.  Hippotherapy is horse back riding therapy for kids with disabilities.  They take all kinds of kids with different developmental delays.  Oliana is going because of her delayed motor development.  The movement of the horse is supposed to help her to learn how it feels to walk correctly.  It will also help her develop her core muscles and teach her to hold onto things better. 

She was so cute today.  She hadn't ever been on a real horse, except for one brief ride on a pony at Bonnie Springs outside Las Vegas.  I thought she would probably cry the first time because she would be on the horse by herself and would have to really use all of her muscles to keep herself steady and move with the horse. There are 4 people that are with her at all times while she's riding.  One person handles the horse, there are 2 side walkers that hold onto her feet (for right now) and make sure she doesn't slip off, and one physical therapist that walks behind her. The PT watches her movements and makes sure she's sitting correctly and tells the side walkers how to adjust her position.

The PT told me before the lesson that Oli would probably only tolerate about 20 minutes of actual riding.  She said that if she had a complete meltdown before then that she would take her off.  I told her that Oli would probably complain a little because it was hard and she might be scared up there alone, but that she needed to push her a little.  Even if she complains.  Boy was I wrong!! She rode a total of 40 minutes and didn't want to get off when it was time to go home. 

They also work on speech while on the horse.  Her first 5 minutes there and she learned a new word.  GO. Oliana's PT today was Nancy.  Nancy carried Oliana up to the platform to get on her horse. Before she got on the horse I heard her telling Oli "Now when you want the horse to go, you have to tell her GO".   She had her feel the horse so she knew what it was.  I didn't hear Oliana say anything.  Nancy put her on the horse.  Oli grabbed the reins and said "GO"!!   They went around the arena a few times, starting and stopping.  Every time the horse stopped I hear Oli say "GO".  Then they went out onto the trails for a while and came back into the arena.  She did great and didn't even fuss. There was no head shaking, hand flapping, or any kind of self stim while she was riding.  Nancy asked her if she wanted more or wanted to be all done.  Oliana didn't say anything.  Then she asked her if she wanted the horse to go or be all done and go and see mommy. I hear Oli yell go and then she starts patting the horse with her hands.  Like she was saying "Come on horse. I'm ready!"  Then went around one more time and as soon as they stopped to have her get off I hear Oli yell "GO!"  Nancy looked at me and just shrugged her shoulders.  "We have to honor her request in order to teach her cause and effect."  Around they went, one more time.  This time when they stopped I yelled for her to come over and see me.  She finally consented to get off the horse and was a very happy little girl.  When we got home my mom asked her if she liked riding the horse.  Oli responded "GO!"

Friday, January 8, 2010

YOU MEAN SHE DOESN'T QUALIFY FOR SSI AND MEDICAID? BUT SHE'S BLIND...

This is a question I often get asked from family, friends and therapists. Sad, but true. I have applied twice for SSI and Medicaid for her and both times she has been denied.  Even though she's blind. They claim we make too much money. On paper this may look to be the case but, if you look at our expenses, so far in the red!!! They don't give us credit for what we actually spend on insurance premiums, out of pocket money for insurance claims, or our rent.  I actually now have to go down to the social security office and find out if it would benefit us more if I didn't work.  Can you believe that?  We might actually make more money if I didn't work, she got some SSI money and she recieved medicaid.  Right now we pay about $900 in insurance premiums for both insurances. We have to have two because Seth's is only an 80/20 and he has to carry insurance by law because he has to carry Thalia on his policy. Mine is pretty good insurance but, it is not contracted by her therapy so that's not covered and we're waiting to find out if her eyes will be covered.  It's an in network only policy and we have to drive to Dallas for her prosthetics. If we only have Seth's insurance we end up paying thousands of dollars a month in co-pays.  Pretty much what we're doing right now because of the things that aren't covered. 

I'm so fed up with this whole system!!  It's so disheartening to think that in our country we get penalized for trying to be productive members of society.  I don't want to stop working but, what other choice do I have?  When she turns three she will go to the school district and I won't have to pay anything for that.  She'll go to school in September for 4 hours a week, 5 days a week.  That will be great but, what am I supposed to do until then.  I feel like the government expects me to just sit here and do nothing for her until she's 3.  No therapy or any kind of intervention other than the measly services they provide her.  They won't even let me have double therapy.  They were providing her with physical therapy for one hour every two weeks.  Of course that isn't enough for a kid that doesn't walk and is almost 3!! So when we went for outpatient services and she qualified for PT.  She gets it at Kidworks twice a week for an hour each time.  Now the state is telling me that I can't have both.  I can either go with their therapist and get it once every 2 weeks or pay for it myself at Kidworks and get it twice a week. With OT/PT/ST that comes to $640 per month that we have to pay. 

It's so frustruating!!!!!  I have to do the best for Oliana but, why does the rest of the family have to suffer because she needs extra help in life.  And who has the right to say that she shouldn't get that help??  Certainly not some high up beuracrat with all his beautiful healthy children. Who never had to go through all this shit!!  They want to evaluate my case based on figures on a piece of paper that do not even reflect our true income status, not to mention quality of life... They even put it right in the denial letter that they did not even look at her disability, just denied us right off because of those stupid numbers!!! I'm going to call my insurance company to see if they will make an exception and cover her therapy. I seriously doubt they will but, I have to try.  There is also another program in Texas I'm going to apply for. I think it's more for kids with medical disabilities but, I'll try. That seems to be today's motto.  So, I'm off to the social security office to be fed more bullshit and become even more pissed off!!!