The Face on an Angel but the Mind of...something else!
Jordan-Rose (Jordy) just turned four in May and it has been both GREAT and well….NOT SO GREAT. From the time she was born she was certainly a handful. Soon after birth she was diagnosed with “Acid Reflux”, lucky us. I quickly learned that “Acid Reflux” was a synonym for many words, including pain in the ass! Formula after formula after formula before we found one that she could keep down. In between the crying fits she was a great baby. She laughed, played and giggled a heck of a lot. As Jordy got a little older, Carrie began to become concerned with her lack of sounds and then speech and that is where the difficulties kicked into high gear. I of course was telling my wife that she is over-reacting and that my daughter was fine. You see, Fatherhood began wonderfully with Nicky, so I figured things would turn around with Jordy. WRONG!
Our pediatrician recommended an “Early Intervention” evaluation. After a few home visits by the county specialists, she was diagnosed with Apraxia of Speech or Speech Apraxia (depending on your therapist, doctor or reference material). Basically what this means is this: she has a disorder but they really do not know what causes it, why it happens or what to call it and so on but she was not able to formulate simple sentences although she could say each word individually. We immediately began speech therapy through Early Intervention and they soon realized that she may benefit from some sensory therapy and recommended another evaluation for her sensory issues. She was then diagnosed with Sensory Integration Disorder (she had problems with loud noises, touching of her face or hair and any other type of contact such as snug clothing). We began taking her to a Neurologist in addition to the multiple therapists coming to our home.
After one year of therapy, Early Intervention stopped. Here in NJ they only provide services until the age of three. We had to begin looking for another avenue of therapy that we could afford. We found it at a local college. They have a program in which students work with children as the professor oversees the session. We paid $500 for one month of speech therapy (4 sessions) but it didn’t work out. Jordy was misbehaving so much during the sessions that they were never able to focus on the speech however we noticed that her speech was greatly improved, go figure. We now had to begin the process of having Jordan-Rose qualify for Special Services through our town’s Board of Education. All of those that have gone through this then you understand and those that have not had this experience, I hope you never do. It is a painfully agonizing ordeal. At least in our experience, the way the town handles the parents is a disgrace. The social worker we had was rude, unprofessional and not sympathetic to us at all. The BOE had evaluated our daughter themselves and found no such disorders, as previously diagnosed by several other doctors and therapists. They denied our request for Special Services so we hired a really expensive attorney that specializes in this field. She required a $6000.00 retainer and we paid it without hesitation because this is our daughter. That is when I realized that Fatherhood is the most expensive endeavor I have ever embarked upon
My Jordy!
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During this ordeal we began to see unbelievable improvements in Jordy’s speech and sensory development, keep in mind that she did not receive therapy for some time but Carrie was working with her everyday. After many heated debates and calm discussions at times, we decided to have Jordy re-evaluated by doctors and therapists at a children’s hospital that has an entire department devoted to children with special needs. In a nutshell, we were told that they did not believe that Apraxia of Speech or Sensory Intergration was an issue. They felt that she was just a “difficult” child…at times. Now Carrie and I have matching spinning heads!! What the hell do we do? We sat back and thought about this, meanwhile our attorney is butting heads with the school on our behalf. We fought the school for a re-evaluation and they denied it. After more legal battling, our attorney was able to get the BOE’s attorney to grant us our request for re-evaluation. They recommended a Neurologist that is supposed to be the best in this part of the state. Our attorney researched this claim and found that this doctor was very highly recommended across the board. His evaluation was right in line with the children’s hospital, no diagnosis of any disorder. AAAUUUGHHH!
So now we pull the plug with the attorney and receive the remainder of our retainer. We hired a therapist to come to our home and help, not only Jordy but us in dealing with Jordy as well. This continued for several months until we could no longer afford that! So now we are at a point were Jordy has to be enrolled in Pre-K classes. We skipped the 3-year old session and waited for the 4-year old session which she begins next week. Thankfully the teacher and her aide are familiar with my daughter and all of our concerns. She was Nicky’s Pre-K teacher and had many interactions with Jordan, even allowing Jordan to participate in a morning and afternoon class. She assures my wife that things will not be as difficult as we imagine.
Jordan is an remarkably sweet girl with a massive stubborn streak. She can be completely loving one moment to all of us and then the next moment punching her brother in the back. Tonight I witnessed her having a stare down with my wife. Jordan walked around the kitchen table hitting everyone because we were all talking. When Carrie raised her voice at Jordan asking her to stop, Jordan lowered her eye brows and just stared at her. Carrie starred back, not wanting to break and let Jordy win. After several quiet and tense moments, Carrie broke and yelled at Jordan to leave the kitchen but not before she was to apologize to everyone there. Jordan apologized and stormed out. She later returned to tell Carrie that she is the best Mommy! WOW….I will refrain from my next comment.
We are eager for her to begin school, on many levels. She can use the structure and social interaction (interaction not including her 2 brothers). We learned a lot through this ordeal and respect every parent that has a child with special needs. It is not an easy road but we can say that we are satisfied with the latest diagnoses but how do you really know which is correct when multiple professionals tell you two different things? I guess it comes down to knowing your child. Stick with you gut feeling and if you are not getting what you think your child deserves, keep fighting! Fatherhood, Motherhood and Parenthood is not about us as fathers or mothers, it is about the children we choose to create.
Do you have a similar story? If you do and would like to share, please do so. Maybe we can all help other parents going through similar situations.
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