Posted by mary on June 07, 2005 at 13:44:30:
Anna’s Story A-n-n-a. Four simple letters that make the name of such a complex person. Born on October 27th, 2001 to very proud parents. We stared at her in the silence of our room at the hospital. We talked about all our hopes and dreams for her. We smiled as we stared into those two tiny eyes knowing we would love her always, no matter what. Now for the ‘what’. She was born with hypothyroidism, meaning she dose not make the hormone needed for her developing life. We were not ready for that news when it hit and knowing she would need to take medication every single day of her life saddened me deeply. As she got older we noticed she wasn’t responding to her name when we spoke to her. She was always so deeply involved in play and often just never noticed the world around her. She wasn’t always looking around like small babies do. She crawled and walked a little late but nothing so behind that doctors thought it was a problem. When she hit about 18 months I began to notice other odd behaviors. Her speech just seemed to stall out. She began to line things up from her food to her toys. She seemed emotionless most of the time, people remarked she was ‘serious’ looking. When I brought these concerns up to her pediatrician I was told I shouldn’t worry and that she was fine. When she was a little over 2½ years old I brought her to her doctor and specifically asked that she be seen by a developmental center that could address my concerns. I was told it wasn’t necessary because the reason my daughter, Anna, wasn’t speaking was because of the pacifier she had in her mouth. URG! Then, when I said she still wasn’t jumping, climbing or running well he stated that it was pretty normal and all kids reach these milestones differently. Still, I had her seen by the center. Sadly I couldn’t get my appointment until 3 months later. It was then that my husband and I were told what we had already suspected. She was borderline autistic with greatest delays in speech and gross motor. Now what? We were given a book about Autism and sent home with recommendations to enter an early intervention county program. Needing more than that I had her seen by a speech and physical therapist at UVA. Both recommended early intervention, and both agreed she was about a year behind in development. A week later the school called me to begin its trek into their own evaluations to see if Anna qualified by ‘their standards’. The diagnosis was in September and by February we had our IEP meeting, FIVE months later. This meeting was to discuss the educational plans for Anna. Oh, and after all their evaluations by their speech and physical therapist, school psychologist, pre-school teacher and by a county social worker, they crunched the numbers and she qualified. We were told at this IEP meeting what their findings were and I looked at my daughter and thought “They still don’t know her”. Anna has made a lot of progress with her speech but is still not conversing well, other than immediate wants. Her 1½ year old brother can out run her. She still has an immature gate and her legs are wide apart as she walks. She thinks so deeply and is very above average in problem solving skills. She can work 25 pc puzzles. She can draw at a five year old level as well as navigate on software programs for 1st graders. She loves to get on the computer and watch cartoons. She is very typical in so many areas that people, including myself, can get fooled into believing she doesn’t have a problem. Yet, a lot of her behaviors are seen half the time and it’s that half that keeps reminding me she isn’t ok. It’s that half that keeps me pursuing the best care possible for her and looking for ways to help her. Anna loves her family and friends. She is a gentle spirit. She loves to help and loves to be independent. She is beginning to dress herself and is starting to show interest in potty training. I have a lot of hope and yet still uncertainty looms over me constantly. I never want to be unprepared for anything, so I have learned a great deal about Autism and other related disorders. Mental illness runs on my side of the family and I want to be sure I am ready for anything. Anna still has trouble jumping. She has never ran and jumped on the sofa. She has trouble climbing stairs. She can’t hop or skip yet. She can’t converse freely with me. For instance, she can’t tell me what she wants to do or tell me if she has a blister on the back of her heel that is hurting. She may point, or shout out parts of a sentence that we can put together (much like a puzzle) and figure out what she is saying. Though she is talking more she still isn’t in her peer group. I feel bad for those whose children are more autistic and have severe verbal issues. I know I have it easier than them but I also know I have it harder than the typical parent. My friend’s children, born around the same time as Anna, are entering the next level of learning. They are asking questions like why and how while my daughter is struggling to understand what words mean. She is far away from the day when she says “mommy, why is the sun yellow?” Now Anna is 3 ½ years old. I am awed by the way she views the world. I am her biggest fan. I thought I was going to teach Anna to be the daughter I dreamt about; instead she is teaching me how to be the mom she needs. In efforts to be supportive some friends and family have made remarks like “Don’t worry, she’ll catch up”. Or “She is talking so much more now, she is going to be fine.” Though I am happy to have the support and I know their intentions are good, it devalues my situation and the work I have put into teaching her at home. The only reason she has made such progress now is from my using techniques and labeling constantly. We learned some American Sign Language and we use it to help her build sentences. I parallel talk and help her make sentences every single day, all day. I am tired. So to say “oh, she is just fine” hurts my feelings. I know she will be ok. I have no doubt she will continue to progress but to what level, I don’t know. I am preparing myself for what ever comes down the road so if friends and family want to help, the best way to do that is to get educated about autism spectrum and its related disorders. Look at Anna, really look at her, and realize she struggles to understand and communicate. Appreciate her uniqueness and embrace her differences like we have. Saying she is ‘ok’ may help you feel better about her struggles but it won’t change them. Nor, will telling me not to worry. I will worry. I will always worry. If I hadn’t worried about her when I did she wouldn’t be in special preschool getting speech therapy and physical therapy. All this is enriching the quality of her life. She will be able to do as her friends do and all my worrying will have made that possible. (: