March 6, 2007

Princess Jessica Is Locked In A Castle Tower!!!!

It is true, the old adage, that children do not come with a handbook!!!

When I found out that I was having a daughter during my 5 month Ultrasound, I was so excited. I was going to give her so much love. She was going to get more hugs and kisses than any child had ever gotten. I was going to give her all the affection, attention, and love that I had wanted but never gotten from my mom.

After many hours of labor, the OB started to lose both of us, we were rushed into surgery, and she was born via C-Section. The idea of perfect natural birth was forsaken but she was beautiful and healthy. Ryan brought her to me so I could see her before they wheeled me out to the recovery room. I cried because she was so perfect and beautiful.
I couldn't wait to take her in my arms. I wanted to hug and kiss her and never let her go. I was so in love!!!

Then the bubble burst...

After I was taken to my room, they brought me my daughter which we had named Jessica. She quietly looked around and I quietly checked her out. I had never seen such a curious newborn. She seemed like such an old soul. Like she had done this before. I picked her up and unwrapped her bunting to see all her little body parts. She did not like that very much so I quickly wrapped her back up and cuddled her. Thats when she started crying and nothing I could do could get her to stop. A nurse came in and said that she might be hungry so I tried to nurse her. She screamed and pushed at me. She did not want to latch on. After quite a few frustrating minutes I put her back in the bassinet. Immediately after I placed her in the bassinet she stopped crying. I thought maybe she was tired from her long journey and just needed some time to adjust. I believed this until the next time she started crying, I tried to hold her, and then when that didn't work I tried to feed her again. She still pushed to get away. I thought I must be doing something wrong, so I called the nurse and went over breastfeeding techniques again. The Nurse said that I was doing the right things and that Jessica just wasn't hungry. Jessica immediately stopped crying after she was put back into the bassinet. For the next three days this scenario was played over and over again. I finally was able to get her to latch on but Jessica was never a willing player. I ended up getting postpartum pretty bad at the end of our hospital stay and was put on a mild anti depressant. We were then allowed to go home.

Yeah, we are home!!!

The first month home we found out many things about Jessica's personality. She liked to be in her Boppy, the play yard, and her swing. She did not like to be held by either her daddy or mommy. She did not like to nurse. She was content if she was left alone. After 2 months of trying to get her to nurse and after much frustration eventually giving her a bottle. I decided to stop breastfeeding and give her formula instead.

Can she hear???

Around 4 months, I realized that Jessica didn't startle at loud noises. She didn't turn her head when her name was called. She didn't look at us when we were talking to her. She seemed to be in her own little world. As a test, I placed her near the kitchen entrance and then I threw pots and pans into the sink. She didn't respond at all. I was very distraught when Ryan came home from work and when I told him why he was very disbelieving. He decided to test her and so he made lots of loud noises and when he got no response he became worried also. We went to her 4 month old check up and told the Nurse Practitioner what we were seeing and she dismissed our concerns and sent us home. Since Jessica was meeting all her other milestones early, I think she saw us as panicky new parents.

At 5 months, I told my Birth&Beyond worker about our concerns and she had the county health nurse check her out. The nurse tested Jessica's hearing and told us that Jessica had definite severe hearing deficit. Jessica ended up getting the Rotavirus from another child that day and ended up in the hospital. Her Ped came in to see us and we expressed our concerns. He then tested her hearing by making loud noises and even though he made the other child cry that was in our room, Jessica did not respond at all. He concurred that there was a problem and had her have a hearing test while we were there. We didn't get the results for 2 weeks after we went home. Turns out her brain had very minimal response to the stimuli introduced. We were sent to a audiologist which did more testing. The results we received after a month was pretty close to the other findings.
We talked to our Ped again and he said that her hearing difficulties from what he could surmise from the report was caused by fusion in her ears. We were supposed to go for more testing but because of our insurance having policy changes we had to go to a different audiologist.

Low and Behold!!!!

Around 11 months, Jessica started to interact a little with us. She started to say Momma, Dada, Hi, and honey!!! We were so happy. Thank God for small miracles. She still had her problems with being held but she was able to hear.

It was also around this time we realized that Jessica didn't like places that had bright lights or lots of people. She would scream uncontrollably until we left. So we spent much of our time at home. We spoke to our ped about her issues, he told us that we had a high maintenance child, and not to worry about it. She was still hitting her milestones early, so why worry.

Back To Square One...

Around 13 months, Jessica stopped talking and responding to us all together. We brought it up to her Ped and he told us that she had a little fluid in her ear but not enough to cause her to not speak or respond to us.
He sent us to another audiologist for more testing. After a two month wait we finally saw him for testing. He tested her and then suggested that we have tubes be put in her ears. I asked if that would help her hearing and he told me it may slightly or it might not at all. I decided that this was not a good enough answer and declined. He was not happy and did not offer to see us again.

She Can Hear!!!

Around 18 months, Jessica started to hear and speak again. She was way behind but was slowly improving month to month. Due to her lack of speech, she started throwing incredibly violent tantrums. We spoke with her Ped at her 24 month well child appointment and he put in a referral for Jessica to get speech therapy. We were sent for speech evaluation and were told that Jessica definitely needed speech therapy and was scheduled for our first therapy session. Unfortunately we never got to go to the therapy appointment. Jessica's Ped decided to no longer take the insurance we had and so we had to switch insurances. The new insurance only let us go through the school system for evaluation. It took 6 months to get evaluated and since she talked like an 18 month old at 2 1/2 years old. She did not qualify. Though while the evaluators were testing her, Jessica got frustrated with the tests, started screaming at the ladies, threw the testing tools at them, and then curled up in a fetal position, rocked back and forth, and sucked her thumb. The evaluators suggested that Jessica be tested for High Functioning Autism.

Jessica, High Functioning Autism???

First thought, not my daughter!!! Ryan and I started looking up HFA on the internet and all the sudden red flags went up. We talked to our Ped and he suggested we see a Pediatric Psychiatrist. We took Jessica to go see one and she said that yes, Jessica has sensory issues but there was nothing that she could do for her and sent us home. 3 hours later CPS showed up and said that there was a report given that we were over medicating Jessica with her asthma medication. The CPS case was closed by the end of the day. The CPS worker spoke with Jessica's Ped and Allergist and they both verified that we were giving Jessica the right dosage for her severe Asthma.

Once Burnt, Now Shy....

After our run in with CPS we were to afraid to continue our search for help for our daughter. So for the next 2 1/2 years we dealt with Jessica's unique characteristics on our own. We did what worked best for us, her, and our family. We learned coping skills. She has issues with textures of foods. She doesn't like to be touched unless she initiates it or is asked first. Her behavior becomes erratic when there is a lot of noise, bright lights, certain smells, or a lot of activity. She has mood swings. One moment she is happy and the next she is sad. She has never slept well, she would sleep for a couple hours and then get up for the rest of the night. She likes to escape out of the house. She has never had a fear of strangers. She doesn't really have a bond with us. Sometimes we feel that she could take or leave us. She plays beside her siblings but rarely interacts with them.

The Straw That Broke The Camels Back!!!

This summer Jessica became violent toward her siblings. If they were to loud or invaded her space she would hit, kick, or push them down or into walls. She became increasingly whinny and cried all the time. She started taking off all by herself a lot more. She started throwing horrible tantrums. She started sleeping less than she already did. There were nights she didn't sleep at all. She tried to choke her 3 1/2 year old brother and pulled her 12 month old brother under the water in the pool. When we explained that she could have killed them and then they would not be around anymore. She said she didn't care, she had no remorse. She wanted to know if I was going to die. When asked why she would ask such a thing she said because she wanted me to. Ryan explained that then she wouldn't have hugs, kisses, books, or games with me anymore. She didn't care.

This was too much for us to handle by ourselves anymore. So we called county mental health and they got Jessica hooked up with a therapist. After a few meetings with Jessica, the therapist suggested we have Jessica see their Pediatric Psychiatrist. At the first appointment with the Psychiatrist she said had we ever heard of High Functioning Autism and/or Aspergers. She suggested that Jessica be evaluated because she exhibits a lot of the characteristics. We agreed of course, seeing as it has been suggested that Jessica may have this before.

Long Road to Evaluation...

The Pediatric Psych sends a letter to our Ped to ask the Ped to get a referral to a clinic that can evaluate Jessica. The Ped sends a referral to the insurance that denies the referral. The insurance says we have to go through our county regional center. The county regional center won't help Jessica until she has a diagnosis. At Jessica's school SST, we are told that there is a grant for children in need to be evaluated. Jessica is given the grant and next week she will be evaluated and hopefully this will start us on the road for help/therapy for her.