My daughter has horse therapy each week. I recently had to call the director and speak with her about a few concerns I had. My daughter was enjoying riding but she would kind of shut down after each session. It would take a
good thirty minutes or so for her to start talking to and making eye
contact with me again. The volunteers that were helping her would ask her to say or do something during the session, and when she would ignore them, they would just keep walking beside her horse and let it go. If you know my daughter, you know that she will test you to see how much she can get away with. If she doesn't have to talk, she won't. If you cater to her, she will take full advantage. Not that I blame her. If people catered to me all day, I would probably sit back and let them also.
When we arrived at horse therapy yesterday, they had placed a younger volunteer with her. I am sure she was probably in college, but she looked like she could have been in high school. I thought to myself, here we go again. Surely, this young girl wouldn't have any clue how to deal with my daughter with autism.
Well, I am happy to admit that I was completely wrong. This girl had my daughter saying and doing things on the horse that none of the other volunteers had been able to. She was kind to my little girl, but she insisted that when she asked a question that my daughter answered. They were a perfect match. After the session, my daughter was more engaged with me. She made great eye contact and answered when I asked her about the lesson. This is a huge improvement from the previous sessions.
Even though I have spoken previously about not judging others, I realize that I am sometimes guilty of doing just that. This little experience has opened my eyes to the fact that if I expect others to be less judgmental, then I need to hold myself to those same standards. I will do my best to be less skeptical regarding the people who work with my daughter. Maybe one of these days I will listen to my own advice and not "judge a book by it's cover".
So, I took my daughter to her new "school" speech therapist today. I say "school" therapist, because my daughter also gets private speech therapy each week. The new therapist is located in what will probably be my my children's elementary school. As I pulled up to the school, a million thoughts ran through my head. Reality hit me smack in the face.
I can't believe that my little girl is almost old enough to be going to "big" school. In less than a year, she will be a student there. The thought of having to pull up in the car rider's line and possibly having to just drop her off terrifies me. Will I be able to walk her in each morning? Will they make exceptions to the rule that kids have to walk to their own classrooms, or will she be ushered in by some random person. What if she gets lost and no one realizes. What if she throws a tantrum and the people around don't know how to deal with it, or worse, what if they yell at her because they do not realize that she has autism. I mean, she looks normal, so it is very possible that somewhere down the line someone will fuss at her for not responding to them, or ignoring them when they tell her something.
The idea of her spending an entire school day on her own terrifies me. I know we have yet to decide what her education plan will be like for next year. But I still couldn't help but feel overwhelmed when I pulled up to her "big" school. Hopefully by next year, I will be more mentally prepared.
When I got to my daughter's preschool yesterday, the assistant teacher met me at the door and said, "Your daughter made me cry today". I immediately thought, "Oh Lord, what has she done now?". The teacher, Miss Jennifer, has gotten another position at a county run preschool and is going to be finishing out this week and then leaving this preschool. She started tearing up again as she told me what had happened. Evidently, my daughter had gotten dirt in her eye on the playground and was whimpering. The teacher pulled her up onto her lap and was trying to convince my little girl to let her see her eye. My daughter said, "No" quite emphatically multiple times. When she couldn't think of how she could convince my daughter to let her see her eye, the teacher told her, "Miss Jennifer is leaving next week and we won't get to see each other anymore. Can I please see your eye?" My daughter immediately stopped crying, looked up at Miss Jennifer, and said, "Don't go Jennifer". Jennifer said that she couldn't help but start to cry. If any of the other kids had said this to her she probably wouldn't have gotten so emotional. But that fact that my daughter, who rarely speaks, actually looked her in the eye and said this to her really touched her. I was touched when Miss Jennifer told me too. I hate that Miss Jennifer is leaving, but I am thankful that she was able to make a connection with my daughter.
My daughter never ceases to amaze me. She doesn't say much, but what she does say is full of meaning and comes straight from her heart. Sometimes we question whether she is understanding what is being said to her. This shows me that she understands more than we give her credit for. Maybe if we just slow down and listen more, we will get a clearer view into her little world.
When my daughter was diagnosed with autism, my husband and I had no clue what that really meant. We walked out of the doctor's office and had no idea what to do or where to turn. We just knew that our daughter's life would never be what we had envisioned.
It took us some time to tell our families. It took us even longer to tell our friends. We had so many questions. What if the doctor was wrong and we had prematurely labeled our child with this diagnosis that has such an ugly stigma. Would she grow out of it and no one would ever have to know? It seemed so similar to having a death in the family. We went through the five stages of grief (Denial, Anger, Bargaining, Depression and Acceptance). The bad part was that we went through all of this completely on our own. It was not that we didn't trust our family and friends to be understanding. We just couldn't bear the thought of facing the multitude of questions we knew we would receive. I mean, how on earth could we answer the questions that others surely would have, when we were still searching for our own answers.
We eventually told our immediate families. We talked it over and decided not to tell aunts, uncles, cousins or friends at that time. Telling everyone would make the diagnosis real. It was almost as if, as long as we didn't talk about it, it couldn't be so. Of course, the autism didn't go away. The doctor wasn't wrong. That meant we eventually had to tell the rest of our family and our friends. The reactions that we received varied greatly. Some just said how sorry they were that this had happened to us. Others questioned the diagnosis with statements like, "What in the world makes the doctor think that?" Nothing that anyone said could have helped. We didn't want people to feel sorry for us, and we sure didn't feel like having to justify a diagnosis that we would have given anything to have been wrong.
I sadly remember that we decided not to tell my daughter's cousins. We just felt that they were too young, and we didn't want them to treat her differently or think differently about her. I later found out that the older cousin had overheard her grandmother speaking to a friend at church about her granddaughter having autism. The older cousin was so upset. She cried to her mother and said, "how could this lady at church know that her cousin had autism, when she didn't know and she was family." When I found out that this had happened it broke my heart.
I was not mad at my mother in law for talking to her friend about my daughter having autism. She surely needed someone to talk to and we needed all the
prayers we could get. This event just helped me to see that we weren't
doing anyone any favors by keeping the information to ourselves. I felt like I had wronged my niece by not trusting her with this information. She was young but has always been mature. Looking back, we should have been up front with her about the autism diagnosis. My niece is growing into a beautiful young woman and she is absolutely wonderful with my daughter.
Since the time after my daughter's diagnosis, my outlook has totally changed. I felt so alone after I was told my daughter had autism. But when I finally started confiding in others about my situation, it was amazing the amount of people who had a child or knew a friend whose child was on the spectrum. If people had been more vocal about their own experiences, I probably wouldn't have felt quite so alone during that scary time.
The fact that one in eighty-eight kids is diagnosed with autism speaks to the fact that many more people are affected by this diagnosis than we realize. Just because children with autism have trouble speaking, that doesn't mean that the families and friends of the children should have no voice. My goal is to increase awareness. I hope that others who are in the midst of the grieving process after receiving an autism diagnosis won't feel quite so alone in their journey.
