it just keeps me in this crazy whirlwind of "life".
My mom sent me an e-mail from a friend of a friend. She has a son who is Autistic, and the last line of the e-mail said "God only gives children with special needs to those who have the biggest hearts". I cried. I cried because it touched me like no other words have ever touched me. I don't know this woman, but she really gave me a sense of relief. I don't know how to describe it, and I probably never will be able to. Macie has not been diagnosed with anything yet. All we know is that she is "delayed" in many areas. She has what I call "Autism days". I mean absolutely NO disrespect when I say that. Yesterday when I went in to get her in the morning, she just wasn't herself. I had to hold it together because I know if I get upset, she has a bad day. She didn't look up right away when I said "good morning Face", and when she did finally look at me it was like I was a stranger. She had no expression, no emotion and it was almost like she looked through me. It broke my heart. I knew it was going to be an "off" day for her. It was, and it was hard. I found myself wondering if she was sad, or upset, or confused. I tried all day to make her "better". We played outside, she only wanted to be out there for about 5 minutes. Other days I have trouble getting her back inside without a fight. She wanted to be inside watching Backyardigans, and laying on the floor. This type of day makes me wonder if I am expecting too much of her, if I am pushing her too hard to be at a developmental point that she is just not at yet. I have days where I wake up cranky and in a daze, why can't Macie have days like that too? She still continues to surprise us. After her bath that night, Phil came upstairs with Emma and we had our group hug before Emma had her bath. Macie was looking at Emma and smiling, she reached out her hand to her. We assumed she was going to try and poke her eyes out, but she didn't. Instead, she leaned in and gave her a kiss on her forehead, then she leaned over and kissed Phil, and then she leaned over and kissed me too. We didn't ask her to do this so it was extra special, and sweet. My heart was so overloaded with happiness I thought it was going to explode in my chest. It's moments like that that make the not so great parts of the day seem insignificant.
Why am I writing all this? It's important to me, to Phil, and most of all, to Macie. I want her to look back at this someday and see how far she has come, and all the joy she brings to our lives. It's therapy for me too. I feel better when I write about my feelings on all of this. I try to internalize a lot of what I am feeling so that it doesn't affect Macie and her progress. If I am upset, she is upset.
Another reason for writing this post was Macie's trip to the ENT. We knew it was not going to be an easy appointment, but we were prepared. We had dinner before we left, we brought games, books, toys, snacks, and her blankie!!! Her blankie is now just for bedtime, nap time, and in the car. We figured we would bring it so when she got upset it would be an extra special treat for her to have it. Anyway, we talked with the Dr., and told him she is in Early Intervention, told him she has not been diagnosed with anything, but told him what we knew....blah, blah, blah. And then the exam began and she was very upset. Phil had to hold her on his lap and restrain her while the Dr. looked in her ears, nose, and throat. She is one strong little girl. Phil had her in some crazy wrestling holds that Hulk Hogan couldn't even get out of, and she managed to break free of them. He did finally get a look, but then said he would have to take her back to another room to look at her ears under a microscope thingy. I don't know what went down back there, I stayed with Emma and listened to my little girl scream bloody murder from the other room!!! Phil, Macie and the Dr. came back into the room. Phil took Macie for a walk while I talked to the Dr. He said everything looks great, and he doesn't see anything that would be bothering her enough to disturb her sleep, or her mood. That's great news.....sorta. It's one of those situations where you are kind of hoping they find something minor that might explain some of her issues, but you're relieved there is nothing wrong. He said it could be sensory issues. We talked about how kids with Autism have sensory issues, but kids with Sensory Integration disorder are not necessarily Autistic. He asked if her therapists suspected Autism, and I don't know the answer to that. I told him that they don't/won't/can't say either way. He said, "I am fairly certain that she is not Autistic. She acts very appropriately for a 21 month old (being examined, etc.), and she makes great eye contact, etc." He's obviously not an expert when it comes to Autism, but he has had many pediatric patients that are Autistic and he didn't see any significant signs. It's always wonderful to hear that, but I don't, and will not get my hopes up. He's only getting a snapshot of her. I respect his opinion. He is one of the top 100 ENT's in the Country, and I really liked him. He was great with Macie, and he really was thorough and spent a lot of time talking to me and asking questions. He is also an allergist so our next step is to do some blood tests to check her for allergies. He didn't think that allergies are an issue with her either, and he felt that the tests wouldn't be very helpful, but I asked him to do them anyway so we could rule that out. So....that's the next step....more tests- ugh. My poor baby!
No comments:
Post a Comment