This is what most of us would call a yearly check-up with our child's primary doctor. As a special needs mother I dread these visits with Andrew. We recently had one a few weeks ago. I am very aware of Andrew's delays and where he is in comparison with his typical peers. I have worked really hard not to dwell on those things and not compare him to other children. I just focus on him and his progress or lack of. However, the receptionist handed me a form to fill out in regards to his development. It was only a series of questions and you simply answer yes or no whether or not your child can do what they are asking. Then, under each group of questions, it asks you if you have any concerns regarding your child's development in this area.
This was very hard for me. As I was going through the questions and marking the answers I wanted to sit there and just cry. I couldn't answer a single yes to any questions at all, except for when it asked, "Do you have any concerns regarding your child's development in this area?" I wonder what they would have thought if I had answered no after marking no on all of the other questions. He wasn't doing anything a four year old should be doing in any area of development. This isn't something I didn't already know, I just try not to think about it that often. When you actually see it on paper staring at you, it brings you back to reality that your life and your child's is far from typical. We don't share in the same activities as most parents do with a typical four year old. Andrew is over 60% delayed in most areas and 75% delayed in communication. He can't pedal a tricycle or maneuver a ride on toy, no coloring, no pretending, no running or jumping, no back and forth play with toys (he prefers to play alone with the few that he plays with), and the inability to put his arms around me for a hug. Don't get me wrong I love the cuddling he does, tickling him to hear his sweet laugh, the big beautiful smile he gives just by simply looking up at me, the fact that he would prefer to just sit with me all day, and how he gets excited over the little things. However, I still miss all the things that parents get to do with their typical children. I usually don't focus on those things, but this particular moment brought it all back to me while answering those questions.
It would be nice for parents like me if they would flag his chart so that we are not asked to fill out these forms regarding development. I understand that these are needed so that a problem with development can be caught as early as possible. They just aren't necessary in a situation like ours. They are already completely aware of Andrew's development. If they only knew how hard this is for a special needs parent in a situation such as this.
The visit with the pediatrician wasn't quite as bad, except there wasn't really anything positive discussed. It was about therapies, muscle weakness, curved tibias, seizures, sleep issues, behaviours, allergies, medications, very brief discussion on development, and what the next step was. Nothing 'good' was discussed, just the necessary. I could tell you many wonderful things about Andrew but they don't have time to listen to any of that once you've discussed all the issues that he faces. These are all necessary things that have to be done for his care, but it is still difficult.
I remember with my daughter being able to be proud of the development she was making and being able to confidently say, "Yes, she's been doing that!" They were visits to look forward to, except for dealing with the ones where she received immunizations. The discussions with the pediatrician were always positive with many positive comments. How I miss these yearly check-ups.
I put on my usual front when the pediatrician came in the room. I never showed any of my true feelings over the situation. I have a tendency to hide my feelings. I appeared to have it all together, unless she's good at seeing through people. As we left, I had Andrew waving to everyone while I was smiling, yet crying on the inside. Maybe I just don't want anyone to realize how weak I really am.
Others tell me "You're doing such a wonderful job. Well, I don't think I'm doing anything that most Mothers wouldn't do for their child if they were faced with the same situation. Some tell me, "I don't know how you do it!" Well guess what, most of the time I don't really know how I do it either, and many times I don't feel like I'm doing it like I should. And I'm doing it just like you would if you were faced with the situation. I love Andrew just the same as a typical mother, it just requires more out of me to be his mother. Being a special needs mother doesn't make me extraordinary in any way, just different.
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