One year anniversary

Last year on December 18, 2007 my oldest daughter was diagnosed on the autism spectrum. What does that mean? It means that my daughter is special. And I mean that in every sense of the word.

It all started when Carmela was young, I'd say before she was even one years old. I just had this feeling inside me that something wasn't "right". I use that term loosely. The feeling inside me grew and grew as Carmela grew and grew. As I spoke to people about it, people thought I was nuts. I'd mention it at every well visit appointment Carmela had, and again the doctors thought I was crazy. "She can talk" is all I heard. Finally, when Carmela was 3 years old, I KNEW something was not right. My daughter lived in her own little world, where Dora and Boots were her friends. She walked around the house flapping her arms and repeating full episodes of Dora. I wondered if I let her watch too much TV, but knowing how I was adamant that she not watch more than 30 minutes a day, I didn't think that was too much Tv. Plus I knew kids that watched upwards to 3 hours a day of TV, and they didn't do this. When I took Carmela to playdates, it got worst. She would go the opposite end of the kids, or just stick by my side. Caremla was not shy, not a shy bone in her body, so I knew that was not it. Carmela suffered from severe constipation from birth. It was so bad that she had to take a grown man's dosage of Miralax (which now I know better and I do not recommend you let your children take Miralax at all). And even the huge dosage of Miralax didn't work at times, so she would need an enema every other day for months at a time. Again, the doctors told me this was "normal". She didn't sleep. Seriously. I always hear from parents that say their kids don't sleep, then you hear about how they let their kids watch TV at 2:00 am, or give them something to drink or eat, or let them go in their bed, etc. Well, gosh I wouldn't sleep either if there was a party everytime I woke up. I didn't do any of this with Carmela. She just didn't sleep. The bags under her eyes were so bad. She started rocking. We'd go to parties, and literally in the middle of all the kids playing was Carmela on her belly rocking away. She could care less what the other kids were doing, she would just rock. Carmela is extremely smart. She could count, memorize ANYTHING, knew her ABCs, etc. before other kids her age. Anything that only used her brain, she excelled at. However, her muscle tone was so weak. She couldn't even hold a pencil or crayon because she couldn't grip it strong enough. She had no self-help skills, and no drive to help herself either. However, when an adult talked to Carmela, Carmela was smart as a whip. She could not hold a conversation, but she could answer questions if asked. She was so smart and so cute that she had everyone fooled. My family members thought I was crazy. There was a period that my own husband thought I was crazy. Her doctors thought I was crazy. Yet, it killed me that I knew something wasn't right and NO ONE would listen. I didn't know what to do.

In July of 2007, we went to a bbq at a friend's house. Carmela was doing one of her "episodes" that I called them of flapping her arms and repeating Dora shows. This was the height of my awareness that something was off, so when someone made mention to it to me that Carmela was doing this, I blurted out that it wasn't normal, but I didn't know what to do. They worked in a school district I believe, so they told me who to call to get her checked out. This was the first I ever heard of early intervention. That was a Saturday and I called first thing on Monday morning. We made the appointment for the end of July to get her checked out by early intervention. When they checked her out, they gave me a few names of doctors in the area to get a full examination by a doctor that specializes in autism. I knew then that I finally found someone that saw what I did. It was at this point that Chris started seeing what I did. Not that Chris disagreed with me or didn't want me to get her checked out or anything like that, he just didn't have the nagging feelings I did. So while he backed me up, I think in the back of his head, he thought Early Intervention would just say she was fine as well.

So now we are in September and I have an appointment with CHOP to have Carmela evaluated with their autism team. And I have the results meeting with Early Intervention, and Carmela breaks her femur. She's in a full body cast for a month, and undergoes 3 surgeries. CHOP and Early Intervention don't want to see her until they can get a full idea of what is going on and she has use of her two legs. So we are postponed for a bit. Then in December, right before Carmela's third surgery, we go to CHOP. We meet with an occupational therapist, physical therapiest and a speech specialist. Lastly, we meet with the doctor. They test Carmela in every test under the sun. And then I wait. We had to go back to get the results, so they could all write their reports and meet and discuss their findings with one another. So before the results meeting this time, the reports start pouring in. Each one worst than the next one. It seriously felt there was no end in sight. On December 18th, the end hit and it hit hard. Chris and I go to our meeting, and when the doctors walk in, the first words out of their mouth are "Your daughter is wonderful, BUT...." that damn dreaded BUT. I hate that word. You know it is not good when you hear "but"..... we feel that she is on the autism spectrum. CRASH....

Just writing this all down, brings back such memories of this time. Just recently I was talking to a few friends of mine, and they were saying how strong they thought I was during that time. They said they never heard me say "poor me" or "poor Carmela' or never feeling sorry for myself. I must say that while they are right, I decided on the way home that day that Carmela was the same little girl after the diagnosis as she was before, and that I knew I would be the rock she needed to get her through this. If we can't cure it, we will come close. I promised myself that on that day. I could have sat there and let my world and Carmela's world crash and burn, and just let life pass us by. We did not do that. We got on the computer to research, went to the library to take out books, met with therapist after therapist, and today she is a different child.

In the past year, Carmela has been in private physical therapy, occupational therapy, speech therapy, sensory therapy, she has had her own behaviorist, her own TSS (therapeutic support staff), plus she receives physical therapy, occupational therapy and speech while at school. She goes to a "special" preschool right now, which is a full day school. When she gets home from school, I make sure I do "sensory" with her and I make sure we practice our fine motor skills. We also have taken Carmela to a "special" doctor, who is now her pediatrician. Dr. Miller is known as a DAN! (Defeat Autism Now!) doctor, and I must say he is the answer to most of my prayers. We tested her for everything under the sun, and it showed a soy and dairy allergy. We also learned that gluten can do so much harm to children on the spectrum. So we changed Carmela's diet, she is now gluten and casein free (we are working on soy free as well). We also worked on her "pills' as we call them. She is on a probiotic (to help with yeast); a super nu thera (which is like a really grand multi vitamin); Melatonin (to help sleep); cod liver oil (helps brain function -- everyone should take this); Oxypowder (helps constipation); vitamin C (helps constipation) and we are working on a few others to help her out.

You would not believe the change in my little girl. To be honest, i don't know what is helping and what is not at this point, but I know that when I think of that little girl that I posted about in the beginning of this post, she is almost a distant memory. That little girl no longer lives in my home. Chris and I like to say the fog has been lifted from Carmela. Is she 100%? No. Is she "normal?" No. Is she quirky? Very. But you know what, she is working so hard on it. She stopped flapping (which was replaced by clapping). She stopped clapping. She DOES try to play with other kids now. She has one best friend at school. Everytime she talks about Diana, her best friend, I just smile. I never thought Carmela would HAVE friends! I met Diana's mom the other day and when I heard Diana's mom telling me how Diana is always talking about Carmela, my heart melted. Diana truly is a friend! We are working so hard on this skill, and she's getting it. On Fridays, Carmela has speech with a little girl and the speech teacher has Carmela and the other little girl practice talking to each other, asking each other questions, etc., all that hard work paid off. She has a friend :) Carmela no longer repeats TV shows. Well unless she's really exhausted, but for the most part, she doesn't do that. The other day Carmela went in the basement. Normally she'll only go down there when she wants to rock and doesn't want me to see her. Well, I went downstairs to check on her and she was playing with her Little People toys. I cried again. Carmela VERY rarely PLAYS with her toys. Normally its just talking at them. But this time, I swear she was playing WITH them. That is HUGE for her!

Carmela does have a ways to go, and I only write this because part of the reason I started this blog was so that we can reminisce in years about how it is now. So I hope next year I can read this post and say "WOW, she doesn't do that anymore"......but like I was saying, Carmela does have a ways to go yet. Carmela makes funny noises CONSTANTLY. They say that its sensory input on her mouth and that is why she does it. She also jumps, and rubs her hands together. She says she does this because she likes the way it tickles. She still rocks, and still puts knots in her hair at night (which is the knots are getting less and less) and she only rocks when she's at home or in her room now. Carmela is still very socially awkward. She will try to only play with her brother when other children are around and she doesn't know them. It will come, I know it will. Carmela's hand strength is still very weak. This is something that we are ALL working on. School, home, therapy, etc. It just isn't coming along as fast as everything else is! But I know it will get there. It just takes time, and patience. But this year, for the first time ever, Carmela helped us decorate our tree. She actually had the motor planning to open the string and put it around a tree branch. Simple things that we don't think about are difficult for her. motor planning is a huge issue for Carmela, but in small ways, I see that coming along nicely.

I just want everyone to know what a blessing Carmela is. She has taught me so much about being a parent, about not taking anything for granted and taught me patience. I have learned that "normal" is in the eye of the beholder. I always use quotes around "normal" because she is normal. She's Carmela to me, and God I wouldn't want her any other way. She is such a loving little girl. Carmela is working on eye contact and while she loves giving hugs, she is not fond of giving kisses. We are working on that though :) I don't know what Carmela's future will hold. I don't even know what next year will bring with her going to kindergarten, but I know that I am so blessed to have my little girl in my life. She truly is such a blessing to me, Chris, Joey and I know she will be for the baby too.....

Oops I got to run, off to pick Carmela up and take her to therapy now!