Last month I was excited to find a note sent home in my daughter’s homework folder that she would be receiving an Outstanding Citizenship award, designated by her teacher, at the school’s monthly awards ceremony. Now in another set of circumstances, that might have seemed a bit “ordinary” of an accomplishment to me, but for my daughter I know it represents a lot more. In my previous Leaving the Nest post, I shared what a huge, and often scary transition mainstreaming can be for a special needs student and their family, as they leave the all-hands-on-deck support of a special education classroom to a general ed setting. SDC preschool to kindergarten was a big change, and rough in spots, though with a lot of guidance between teacher and home, we made it across the finish line, at right where we needed to be – whew! Kindergarten to first grade is perhaps just as big of a change. The day is twice as long, staff and volunteers in the class about half, lunchtime included, recesses doubled (and on the “big kid” playground), and homework regular and required (including the debut of the dreaded spelling lists/tests). By all means, so far, we are on track, and I couldn’t be happier or more grateful. Receiving this award indicates just how far my daughter has come in adapting and thriving in an often out-of-place world to her. And despite how I or others might feel about these ceremonies, or the “safety” of a medal, I believe there is little safe or ordinary about what she had to overcome and accomplish over the past four years following her diagnosis.
Academics – Fortunately, the actual work of the classroom has provided the most continuity for my daughter’s learning and progress. The elementary grades do a nice job of overlapping and phasing in new content. It’s been encouraging to see her reading improve, and how she’s gained the confidence to add writing to her already prolific drawing and create stories on her own. Decoding newer words can still be a challenge (it involves a lot of sensory integration!), and she is definitely a visual/whole-word reader. A weekly sharing page provides good, though sometimes tedious practice for her (and me) at home, as well as spelling lists and learning to use a dictionary. Attending, or focusing attention in class has been a long running challenge, but my daughter continues to improve, and by the details she recounts to me of activities and her teacher’s anecdotes, I know she’s regularly checked-in. Interestingly, the newer challenge has been “whole body listening”, showing others she’s engaged, and participating in discussions. That’s a change from last year, where she couldn’t wait to share, use the teacher’s microphone, and yes, occasionally do things to seek negative attention! For better or worse, it seems she’s become more self-conscious of what she says and presents. It’s quite a balance for sure, but for an autism parent, just about any move towards being more socially aware is a welcome one. My daughter also seems to have inherited my perfectionism, and I need to make an extra effort to assure (and model for) her that the process of learning is more important than avoiding mistakes.
Things Social – This is where I believe my daughter has taken the biggest risks of the year so far, and though she may not know it yet, strides. I recall telling myself and others at the beginning of our journey, that more than anything else, I wanted her to have friends – a really good friend or two, the kind that would truly get to know and understand her and “have her back” when the going got tough. Now I know that’s a tall order, for any person, but I believe relationships are the essence of life, and that a child living with disability craves connection just as much as anyone else. One of the most heartbreaking things told with an autism diagnosis to a parent is that your kid will struggle with this basic human need. We all require practice in having and being a good friend, but this can be especially true with the spectrum. Mixed in with her therapies, my daughter has had to learn and refine everything from eye contact, to reading and responding to emotions, to conversation skills and turn taking, to now practicing more complex social interactions in a group setting. She eventually took significant steps, first in connecting with extended family and her younger cousins, then with classmates in her special ed preschool, and on to a good buddy in her mainstream kindergarten. Interestingly, her strongest or most confident connections to date had been with boys. Then there was this year. I credit much to her involvement (and great, intentional facilitation) in an all girls social skills group, but I’ve been thrilled to see my daughter become best friends with another girl in her class. And this is a full-on friendship in the typical sense of the word – I know because I get an almost daily briefing from her in navigating the drama! My daughter’s new BFF grew out of a small group of girls she began interacting with at recess, that shared an interest in finding bugs. (She’s already a naturalist at heart, but we began welcoming more than a few beetles, ladybugs, and ladybug larvae specimens at home!) “Cassie”, I’ll call her, has an especially big heart and personality, and took the initiative to “be friends”. Now my daughter tends to be drawn to more laid back boys, and lead them, but also more assertive girls and follow them. This relationship has been no exception, and her challenge has actually been being able to speak or stand up for her own interests and needs, and say “no” when warranted (those who know her would be surprised that she ever has a hard time saying no to someone!) And so I get the ever frequent counsel session on “Cassie asked or told me to do this today – what can I do?”, as well as reports on “mean boys”, who’s friends with who, and other first grade happenings and mishaps. Again, as draining as all these “teachable moments” can be (and I’m reminded of just how much there is to learn), for an autism parent it’s nothing short of thrilling to see my daughter now take these social roles head on. I admire her resiliency, and hope she stays in the race (and Lord help us when middle school comes round!)
As the classic Newton theorized, for every action, there is an equal and opposite reaction. I believe this sort of thinking might extend to coping with change and anxiety, such as what many on the autism spectrum are asked to do every day. My daughter, especially in this first grade year so far, has shown remarkable ability to adapt and thrive in a general ed school setting, both inside and out of the classroom. Receiving an outstanding citizenship medal is just one indication of this progress, and I am most certainly celebrating, however as her primary caregiver and therapy support, I am also aware of some of the costs. Another dad I’ve gotten to know at my kids’ OT clinic mentioned a while back how his now 12 year-old son was doing great in school, but just fell apart, or de-stressed at home, and I think I’m witnessing the same thing with my daughter. Her anxiety has spiked at home and in other less structured settings, particularly with needing to be in control of her space and belongings, handling unexpected problems, and testing limits. In her own, sometimes teary eyed words, she’s told me “I like things staying the same!” Having a curious and unpredictable-enough younger brother on the spectrum increases the likelihood of some challenges, and things are perhaps complicated (for everyone) by the loss of ABA support this past year. My daughter’s room is her sacred space, and though I still have to remind her to close and lock it off from her sibling, we’ve been able to work out some compromises. She can still save whatever odds and ends she feels the need to (everything from drawings to toy packaging), but she needs to safeguard them there. She may have things in our shared space (living room, kitchen), but they might be moved or need to be cleaned up. We’re staying the course and making some progress. Her room had become a stockpile of immovable monuments, to the point where she couldn’t use her desk or chair anymore and changing bed sheets was a traumatic task, but I was super encouraged lately when she initiated a desire to clean up her work space, and is drawing there again instead of just the kitchen table. She let me reorganize her closet to create a little hideout (every kid needs one!), and now she’s carrying out plans to tidy up other areas, and even throw or give things away. The balance of coping may shift to something else, but for the moment I’ll take delight.
Far From Done
As I referenced the closing song from the Hairspray musical/movie in one of my first posts, “I know we’ve come so far, and we’ve got so far to go” – these words still capture my sentiment during this year and juncture. Leaving the nest into a mainstreamed setting can be a thrilling journey, but it sure is a lot of work, and the to-do and try list seems never ending. I am celebrating the tremendous growth, but the truth of the matter is that we’re still living with autism, and we still have significant challenges and delays to overcome or accommodate (recent comprehensive testing with her psychologist has identified at least some of these present and potential future needs). My son in particular reminds me of the incredible work of therapy and intervention to be done, and we are quite far from being ready for mainstreaming. The combination of my kids’ different needs has made for one of my most exhausting years, and I am now exploring the possibilities of childcare aid so that I can better focus my energies! I think we all cherish success stories and milestones, but I will always know there is a backstory, written in less spectacular, but nonetheless important perseverance. It’s always a delicate balance and walk. On one leg I dance with joy, victory, and gratitude; on the other I attempt to move forward, anticipate the inevitable setbacks, but also reserve hope for future celebrations, both here and in our Home to come!