TLE’s recent progress assessment meeting brought up some thoughts I’ve been having since she entered the center based program. Most days, I do my best to avoid labeling TLE. I keep my head down and think about what she needs in an individual sense. I do my best to not think about what kids her age “should” be doing and instead concentrate on what she is doing right now. For the most part, this works. The fact that I’ve never been around small children and have no idea what to expect sorts of helps. (Does this count as willful ignorance?)
For a month or so after her initial assessment with the county, I found myself in a terrible funk and riddled with guilt. Why is she speech delayed? What did I not do? Did I not stimulate her enough? Did I not play with her enough? I blamed myself for her delays. I cried thinking that I’m a horrible mother than didn’t do enough. I cursed myself. I thought I worried that maybe we could have caught her delays earlier, gotten her help earlier. But I realized something important: she’s developing at her own pace. Being able to accept that has allowed me to move beyond wanting to find a reason why. Now I just want to concentrate on finding ways to help her. That’s where the “special needs” label comes in.
I’ve always been torn on the “special needs” label. I always considered her “high needs” but for some reason, the idea of her being “special needs” has been very hard for me to accept. The fact is that she is developmentally delayed and attends a special needs nursery school. These realities have been very hard for me to deal with.
On days that I’m faced with the reality of her delays, I find myself mulling over what she “should” be doing despite trying not to. On these days, I spend every waking hour that’s not spent attending to TLE is spent poring over literature or researching information about speech delays , sensory issues and how to help her. I look for activities that will address her speech and sensory issues. I keep journals and notes of her progress, writing down what she is doing at home and sharing it with her teachers and therapists. It is on days like this that I think about the “special needs” label and consider that it may be appropriate.
Yet when I see TLE’s classmates and the variety of challenges that their families have to contend with, I feel like I have no right to feel as out of sorts as I do. TLE’s classmates all struggle with challenges ranging from autism to cerebral palsy. Each of these children and their families struggle with a totally different set of challenges, all far more complex and with longer reaching ramifications on their entire family’s lives. I remind myself that speech delays are by far the most common developmental delay and that TLE will likely outgrow this delay in due time. Most of her classmates and their families will continue to face their challenges, head on, for their entire lives. I can’t help but admire their families for being strong in the face of their challenges.
I also can’t help but feel a bit of a whining maggot myself for worrying about our own.
A lot of times, I feel like I’m in no man’s land. On one hand, there’s plenty of support for families with special needs children. TLE’s school provides the parents with local special needs resources, generally tailored for families coping with serious challenges like autism or Down’s. I am also part of a local special needs mailing list which is very friendly and full of warm, supporting people. Yet reading about the daily challenges all the families deal with makes me feel like I’m feeling stressed for nothing. THEIR families deal with so much more; what am I complaining about?
At the same time, I know that I deal with far more than most typical parents do. My day… no, my life… is really centered around her and providing for her needs. TLE is a whirlwind of activity and can be volatile. It used to be that just about anything could set her off, from an unexpected change in activity to an item being given to her in the wrong way. (I am so very grateful that her inconsolable tantrums have improved to the point that they’re no longer lasting hours!!) I spend a good chunk of time researching ways to help her with her speech delay, learning what I can about sensory integration dysfunction and being proactive about her sensory diet. And I have to do all this while reminding myself not to be a helicopter parent, to set realistic limits and expectations and remind myself, above all else, that she’s far, far more than just the delays. That she’s a loving, vivacious child that depends on me to guide her lovingly.