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!"

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!!!

CHRISTMAS, KEKOA, AND ANOTHER BABY GIRL ON THE WAY....

I can't believe Christmas is over already and tomorrow is New Years Eve!! Santa was very generous with the kids and it was really neat to see Kekoa so excited for Santa to come and bring him presents.  He was so serious about the whole idea of Santa being able to watch him all the time and know if he was being naughty or nice.  If I even hinted that he wasn't listening to me his little face would drop and he would  become so sad.  He was very concerned about being the best little boy he could be in the days leading up to Christmas.  Seeing him try so hard was really really cute and I have to say that he was on his best behavior the whole month of December. Now... not so much.  He's always pretty good but, he's being a lot more disagreable than he was a week ago.
Oliana still did not quite grasp the meaning of Christmas and Santa Clause.  She really could care less about presents. Wanting more to eat the wrapping and tissue paper. Everybody did remember this year not to wrap her presents in their boxes. We learned our lesson last year when she got so frustruated opening box after box.  She really didn't understand that there were toys inside those boxes.  This year however, we just wrapped the toys so she got the reward right away.  It was much better.  Her favorite toys were her musical and sound making toys.  Santa brought her the drum set that's pictured on the left.  As you can see by the big smile on her face, she LOVED it.  Maybe next year she will understand a little bit more.

Kekoa is still a great big brother to her.  I still believe that there is just something special about him that makes him so much more protective and excited for her. Her little guardian angel on earth.  Here are just a few examples...
My mom took them both to the park a few months ago.  Oliana loves the merry go round.  On that particular day there were other kids also playing on it.  He sat down right next to her and promptly told the other little girls that Oli was his sister and he had to protect her.  That's just what he did too. He moved to sit behind her, let her lean on him, and put his arms around her.  He also gets very excited when she says a word that he can understand.  The other morning they were both in the living room while I was in the bathroom brushing my teeth.  Kekoa comes running in and says "Oliana said up, Oliana said up. Go pick her up!!"  I also hear him talking to her in the morning on the baby monitor.  This morning he was telling her she was a silly little girl for rolling her prostethic eye up. (An ongoing problem, hopefully to be resolved in February when she gets custom fit prostethics.) Or the time he came downstairs in the middle of the night to get her sippy cup of milk because she woke up and he thought she was thirsty.  He didn't even wake anybody up.  Just got the milk from the fridge and took it back upstairs to her.  The next morning I saw it in her bed and asked my mom if she had gotten Oli milk.  She said no. Kekoa was standing right next to me and said "No mommy, I got her milk.  She woke up and I thought she was thirsty."  Still makes me teary eyed to think about how sweet that was.  He hadn't even turned 4 yet.  I could go on and on with these stories but... you get the picture.

Most of you know, I'm expecting another baby girl in March.  We did go ahead with an amniocentesis to check to see if this baby had Oliana's deletion.  She tested negative. A huge load off our shoulders.  Also when they did my 21 week ultrasound they measured her eye sockets and they measured in the normal range.  They were also able to identify both lenses in her right and left eye.  All wonderful news but,  I won't be completely assured until she gets here, I see both eye balls and then in a few months when she starts tracking.  Honestly I probably won't really relax until she's at least a year old and meeting her milestones.  All part of this I guess.  We originally were not going to find out the sex of the baby but, a lab test identified me as an intermediate carrier for Fragile X.  It's complicated but, basically it primarily affects boys causing mental retardation. Girls usually aren't affected and my number is very low, kind of a grey area.  We found out the sex just to put our minds at ease.  It was strange finding out it was a girl because I really didn't think I cared either way.  Turns out I guess I cared more than I thought. I cried and cried and cried.  Not because I was sad but, more because I was sad for Oli.  I thought of the hair and make up and playing dress up and painting our nails pretty colors and dressing up dolls....All of the things that I'm just not sure Oliana will enjoy that much.  She might but, it just makes me very sad.  I thought if she was my only girl then I wouldn't have to worry about those things. We would just do them in our own special way. My mom brought up a good point though.  Now she'll have a sister to teach her things and show her things she might not want to ask me or want me to show her.  She'll probably be closer to a sister than she would a brother especially since they'll be almost 3 years apart. I'm sure I'll still cry when the baby comes out and I see her big beautiful eyes.  See her open them for the first time, the first time she looks at me, the first time I make a face at her and she laughs.  I remember filling out Oliana's baby book the day after I brought her home from the hospital. There is a question in there that asks what color the baby's eyes are. I just bawled and bawled and sobbed because her eyes were fused, she didn't have any and I couldn't see them.  Something as simple as that, you never know how much it means to have your baby open her eyes and look at you.  I waited a year for my baby girl to open her eyes.  Beautiful blue eyes.  She couldn't see me through them but, for just a moment I could pretend that she could.  I then went home and proudly wrote in her baby book that her eyes were blue.  Just like her Grandpa's, her uncle Michael's and her big brother's  The prospect of having another baby just makes me remember when Oliana was first born and I missed all of those things.  Then I just have to think of Oliana and all the special things that no other sighted little girl does.  The special bond that we have that reminds me that the eyes are not the windows to the soul.  I think of those things and it does quiet my heart.

UPDATE: To Pea Soup

So here's just a little update to my last post. I spoke to Oli's vision teacher, Miss Judy, when she came for her home visit yesterday. She basically told me what everyone else has said. That Oli does what she does because she's totally blind. She has been a TVI for 20 years and said that Oliana is not doing anything more abnormal than what all the other kids she has taught have done. She said that if she thought there was something wrong with Oli she would not hesitate to address it and that she is definitely not autistic. I told her that of course I appreciate her expert opinion but, would still like to investigate the matter a little further and get other professional opinions. So today we went for her outpatient therapy and I spoke to her occupational therapist, Miss Heidi. She told me that yes Oli does display common characteristics of sensory processing disorder but, she is blind and it is very hard to distinguish and label what is abnormal for a sighted child and what is normal for a blind child. She additionally told me that SPD is not recognized by the DSM and they are trying to get it published and recognized in the new addition that comes out in 2012. So even if I could get someone to diagnosis her with SPD it would not count as a dual diagnosis because it isn't recognized and she wouldn't get any more services. She said that in her therapy sessions they are already addressing both the sensory and the blindness issues so her therapy wouldn't change. I believe that all her therapists are addressing both issues so I'm not as concerned that we're missing something.
I also spoke to Tanya, the genetic counselor at the Albert Einstein Medical Center, today. She was the one who diagnosed her with OTX2 and the AEMC is the research hub for anopthalmia. She said that it was ironic that I called about this issue because right now they are working on a grant to address this very concern. She said that I do have a right to be concerned about Oliana's behavior and delayed speech. They have been looking at the kids with anopthalmia and discovering that some of them have sensory processing disorders, some of them are autistic, and some of them develop just as a sighted child. But, there ARE DIFFERENCES. You cannot explain all of these behaviors on blindness. Especially not the delayed speech. They are submitting their research for the grant in January and hoping to open a clinic in July. The clinic will include a developmental pediatrician, genetic counselor, OT, PT, and ST. All of these individuals will evaluate the children and decide where on the spectrum the child lies and make recommendations for their therapists and teachers. She said they have had major problems with some of these kids ending up in autistic classrooms when they are not autistic. These kinds of environments (if the child is truly not autistic) can deprive the blind child of the tactile and sensory stimulation that they need to learn. On the other hand, many blind children that are truly autistic are getting missed and are not getting the services they need.
Tanya agreed with me that, although I would love to bury my head in the sand and ignore it, we need to evaluate her and find out what she has going on and to what degree. So we will be flying out to Philadelphia in August for the clinic. She did say that it is very promising that Oliana does not just repeat everything I say. She is specific in what she repeats. If I say something that she doesn't want she will not say it, instead will just ignore me. When I get to the correct thing that she wants then she will repeat the word. She has also been signing a couple of words independently, without me prompting her. She will ask for milk by herself and she will ask to be picked up. She signs these words. I have to be careful and pay attention though. Sometimes I'll have my back turned and then when turn and look at her and she will just be sitting there patiently signing for milk. In fact a couple of times Kekoa has come up to me and said "Mom, Oli is asking for milk". Sure enough, when I look at her, there she is, squeezing her little fists. How do parents of deaf children do it?
In conclusion to my update I'm going to re post the poem that I had originally posted last year. It's about the privilege of being a mother to a special needs child. It still makes me cry and I think it's quite fitting for this stage in Oli and I's relationship. I hope you all enjoy it.


THE SPECIAL MOTHER by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth;son. Patron saint.. give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint Matthew."
Finally He passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see... ignorance,cruelty,prejudice..and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life, because she is doing My work as surely as she is here by My side."
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

PEA SOUP

Happy holidays to everyone out there!! So we've been here in Texas for two months and things are going pretty well. The schedule is pretty crazy at times but, so worth it for Oliana. She now gets therapy about 10 hours a week, unlike Las Vegas where she got 1-2 hours a week. When she goes to school she'll get more than double that which is very exciting! She receives outpatient therapy 3 times a week, speech, occupational, and physical therapy. She has a vision teacher, Miss Judy, who comes once a week. And an Orientation and Mobility Specialist, Miss Toni, who comes once a week. And a physical therapist, Miss Theresa, who comes every other week.
Interestingly, I had a discussion with Miss Theresa today about Oliana's constant self stimulation and her inability to self regulate. I have questioned Oliana's behavior to numerous therapists and doctors for the past year or so. Only to be told repeatedly that her head shaking, oral preoccupation, hand flapping, repeating of words, and inability to initiate speech were all due to her blindness. Really, in my heart, I did not believe this to be completely true. I've always felt that there was something "different" about Oli. Something that cannot be as easily explained away as just saying it's because she's blind. I've learned of many of Oliana's peers that do not display the behaviors that Oliana does. Most of the day, if left to her own devices, she would spend her time in her own little amusement park that she has created in her head and with her body. This involves numerous repetitive behaviors such as those I described before. There is lots of head shaking (our little Stevie Wonder) which I do know is a blind trait. Lots of hand flapping and touching her face. Kekoa has tried to explain to her that she has arms not wings and she is not a bird and will not fly away despite her persistent flapping. She will repeat almost any word said to her, if she's interested but, will not initiate any kind of communication. If she wants to eat, drink, sleep, play... she will not say any of these things by herself. She will repeat the word but, this involves me running through the whole list of activities that could possibly be the answer to her frustration. She spends the majority of the day crying and throwing tantrums. Something as simple as being done with dinner sets her off into a whole meltdown. This usually means her throwing her head back against the high chair, slamming her feet down and throwing whatever is left on plate onto the floor. Simply because she is unable to tell me that she is all done eating and I haven't properly developed my telepathy yet. Usually as soon as I ask her if she is all done she will say all done and then she's better. Usually...
So today when Theresa came for her PT visit Oliana was having an "Oli day" and being completely unruly. She started telling me about this disorder called Sensory Processing Disorder. It's kind of like autism but, is not autism. Kids with autism have sensory processing problems but, just because a child has sensory issues does not mean that child has autism. Basically it involves everything I described before. Oliana craves lots of sensory input. She loves big movements, spinning, being thrown, weird tactile stuff, messy play...ect. Anything that she can get the most information from. Being blind, this does make sense. I think I learned somewhere that people get more than 60% of their sensory stimulation from vision. Obviously since she doesn't have this she seeks it out in other ways. I tend to think that Oli might be on the end of that spectrum, craving even more than the average child. It's so hard to tell because she is blind but, something is just different with her.
All this means is that we need to go to yet another specialist to have her evaluated for autism and for sensory processing disorder. Sometimes I wish I was the kind of mother that could just turn a blind eye and say "Oh she does those things because she's blind". I just can't do that to her though. As much as it completely breaks my heart to think that there might be something else going on, I have to do right by her. This means acknowledging who she is and getting the professional help she needs to make her the best person she can be. If it is a sensory processing problem then some of our techniques need to change and the way her therapists view her need to change. The way I see it now, the blindness is really a small hurdle for her to overcome. Myself and her teachers really cannot teach her how to navigate and learn in a world full of darkness until we get her out of this little world that she's built for herself. We need to address her behaviors first to be able to reach her to teach her all that she needs to learn. She can't possibly sit in a classroom for 6 hours a day and learn if all she's doing is shaking her head and singing to herself.
So... onward we go. Learning new things about Oliana and trying to do the best we can to prepare her for school next year. She really is very bright and loves to learn. It's just a matter of doing it in the right way to be able to focus her attention. And despite her seeming to be possessed by a demon some days, she can be such a sweet heart. Sometimes you forget you saw her head spinning and pea soup flying out of her mouth just 15 minutes prior.