What happened next

After the conversation with my sister and mom, I decided to do some research on my own of course. I was going to make sure this wasn't what Eden had. We had her physical, her growth was normal, she had a couple of vaccinations for Chicken pox and swine flu. The doctor didn't say anything but we should wait for the screenings for any other information on her speech.

Later that week, we got a call and the doctors office had made an appointment for Eden's hearing evaluation. Then I got a call from CDS(Child Development Services), they verified information and asked about the reason for the referral. I told them she was having some trouble talking. They asked me some more questions about Eden. If she made her dolls talk when she played, did she babble or imitate sentences. I answered no to all of those questions, I had never even thought of it before. She loves to play with dolls like every other little girl and she uses a doll house, but she never makes them talk. She used to babble like every other child, I guess it was last spring when she just stopped. We didn't pay any attention to it. We just thought she was a "late talker", that's what everyone said she was. Last summer she would still grab our hand and show us what she wanted. We never thought much about it.

We now were paying close attention to Eden's speech because we were a little more aware of growing concern with her speech. What we had to figure out, because we knew that she talked, we just didn't know what she didn't say. What we first noticed was that she didn't actually talk, she said words like: drink (sometimes drink please), go, no, up, eat, dress, car, any word you could say she would repeat and everyone could understand it fairly well. With lots of analyzing you figure out a lot.

Eden's first evaluation was a hearing evaluation. It was scheduled in the morning, because I knew Eden has trouble doing much in the afternoon. She passed all of the tests with no problem she even listened very well in the sound-proof room. I was relieved.

Her second was shortly after the hearing evaluation on the same day. The evaluator was very patient with Eden who was a little on edge and didn't really want to sit down and look at pictures. The evaluator and I talked about the tests that she performed and decided she wanted the developmental evaluation done, because she had a tough time following directions and and a couple other little things. They could have been because she was just 3 but she wanted to make sure.

The next evaluation was her developmental evaluation. That test was when things started to make sense. As Eden and the evaluator played together. The evaluator pointed out some key things to me. Like the only time Eden actually looked her in the eyes were when she wanted gratification (which was only 4 time during the whole session which lasted about 1 hour and 15 mins). Eden's attention span was great for a 3 year old. The evaluator also noted that she notices and makes a point to stop and listen to every little sound going on in and outside the room. She repeated a lot of what the evaluator said, but rarely made statements on her own. She also noticed that Eden didn't really care what the directions were, she just played with the toys that were laid out on the table. Sometimes she followed directions and then again she would try to get the toys the evaluator had put away to repeat the previous test. After the test, the evaluator asked me what seemed like a million questions. Some of them were: Does she repeat words or actions? Yes. Does she have trouble with textures like clothing? (Eden rarely wears clothes at home, all of my children were like that. I can't get her potty trained with underwear because she's always taking off her clothes) Does she have food aversions? Yes Eden eats maybe once a day, I try am make sure she has milk or other things so she will keep growing but it isn't unusual for her to eat breakfast and nothing else the whole day.

There were so many things adding up. The evaluator told me that she can't diagnose her with any medical term, but we should seriously consider taking her to a pediatric specialist and have her tested for PDD http://en.wikipedia.org/wiki/Pervasive_developmental_disorder. She also said she noticed that Eden has a lot of sensory issues. The only thing that would put her on the borderline is that she does make some eye contact. An Occupational Therapy (OT) evaluation would probably help us a lot with her behavioral and sensory issues(sensory issues have to do with the overload of the senses).

The last evaluation was the speech evaluation. It was the last test we would have for Eden before our meeting with CDS to discuss her "plan". This evaluation was late in the day. Eden was not very easy to deal with. The evaluator was very reassuring that she sees children with these kind of issues and will take her time and get through what she can. As she went through the test she was familiar with her file and was very helpful in pointing out some of the behavior issues she was having was because of her sensory issues (we still haven't figured out what all of those issues are, that's why I'm lumping them all into "sensory issues"). She got about an hour of testing out of Eden, and she also agreed that Eden needs to be put into a "program" which is to say a preschool for children with similar disabilities. She also should have speech therapy and also OT, if we can get an evaluation done for her.

We have our "round-table" discussion on March 19th, 2010, with all of the evaluators. I'm not quite sure what happens then, but I think we make a plan for Eden. We will probably discuss, what to do next.

I will be keeping this blog to help me with keeping track of her symptoms and a journal to help me stay sane. I'm sure this blog will not be only about Eden but about all of my children, because this effects them as well as everyone in my extended family. I will touch on the things I now notice about Edens personality since she was very little that would lead me to better understand how long we have been dealing with this.